tag:blogger.com,1999:blog-3292925915106829601Wed, 04 May 2016 21:33:09 +0000A Sense Of TumourUpdated 2013
Our son, Joel Charlie Sheldon was diagnosed with a brain tumour on Friday 14th January, 2011, aged just 6 years old. He is bright, enthusiastic, very hands on and very funny, with a dry sense of humour.
This is the story of his fight against cancer, and the fears and emotions felt by his parents.
He already knows how much we care about him. With all the messages of support we're receiving, he'll also know how much everyone else cares about him too....
http://asenseoftumour.blogspot.com/noreply@blogger.com (Jason Sheldon)Blogger23125tag:blogger.com,1999:blog-3292925915106829601.post-3464923968879054539Mon, 07 Feb 2011 23:32:00 +00002012-10-05T22:17:01.115+01:00In search of elusive...<p>Monday 7 February, 2011</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0851.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TWw-extmhJI/AAAAAAAAAGY/wVDP7OS9iuI/IMG_0851.JPG?imgmax=800" alt="Last call for gate 10" width="500" height="500" border="0" /></p><p>Sunday was pretty quiet.. Joel finished his Lego aeroplane - and it's one of the few Lego models that HAVEN'T flown across the other side of the ward.. given it's an aeroplane and thus far the only one you'd EXPECT to fly across the ward, we're pretty surprised it didn't.</p><p> </p><p>I'd gone to work last night to shoot a band at the O2 Academy 3, "Little Comets" for a Sunday red-top.. I was taken aback when a guy came up to me and asked if I was Jason... he and another guy introduced themselves - one of them being Matt, the bassist. Matt then astounded me by saying he was going to give me a t-shirt for Joel - but was going to get the band to sign it first... this he did.. Lovely guys...</p><p>When I arrived at Joel's bed, I told him I had a surprise for him. Laid back on his pillow, arms slightly in front of him, he flickered his eyes just over the top of his iPod case which he was holding horizontally... a look of anticipation... I smiled at him, he smiled back.. then no sooner had he given me that warm loving grin, his gaze returned to the screen at his fingertips and that all too familiar 'squawk' as an angry bird was launched.</p><p>It looked like it would have to wait...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0856.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TWw-gcBUpvI/AAAAAAAAAGc/AMCjxNeuDUc/IMG_0856.JPG?imgmax=800" alt="Little Comets T-Shirt" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>Thanks to the guys from Little Comets for very kindly signing and donating this t-shirt to Joel - Much appreciated!</em></p><p> </p><p>Monday afternoon - I decide to warm a piece of pizza up in the microwave in the parents room.. it's a small little thing, barely big enough to house one of the plates, but I only have two average sized wedges of pizza (ahem)... I'm trying to cast my mind to the timings on my own microwave at home, and also trying to find out the wattage of this one.. "Ok, give me a clue.." I mutter to myself... unaware that the little Irish grandmother from the bay opposite Joel's is in the kitchen there as well..</p><p>In her raspy Irish brogue, she begins to advise me on the technical aspects of the microwave.. "Ah - de best settin' for dis is dis..." and she begins to work the buttons on the display with finesse. There are 3 settings for the 'auto cook' button, which she presses 9 times, cycling through the options 3 times.. then she just pokes random options like some mad scientist, turns the dial to 8:52, and hits the start button. "Dat's what I always use".. she says... as she turns around and goes back to what she was doing..</p><p>Eight minutes and fifty two seconds, on full power, with god knows what other options she'd chosen, but I definitely wasn't cooking a leg of lamb. I struggled to imagine how a leg of lamb would even fit in the microwave, but then I'm drawn back to the timer.. 8:52.... to warm up a couple of slices of cold pizza.</p><p>"It's going to be cremated" I thought...</p><p>The little Irish woman pipes up "Ah, dats de settin' dat works perfect for me all de time... but you might wanna keep an eye on it, it gets a wee bit hot..."</p><p> </p><p>Now I know why the fire alarms go off so frequently.</p><p> </p><p> </p><p>The rest of the day, Joel spends in bed doing a little bit of homework, but mostly Angry Birds. (Rovio - you have a lot to answer for!). There is no physio for a while.. he's hooked up to a drain now possibly for the next week, so he can't even get up to go to the bathroom without the drain being clamped off... he get's through a fair few of the cardboard pulp urine bottles.... Every time he uses one on his bed I keep thinking of the mornings I've woken up at festivals in my tent, scrambling for a 500ml pop bottle.. (quite specifically 500ml... not a drop more!). These would come in useful. I wonder where you can buy them from.. I could probably make more selling these at the Download festival than from photo sales, given most of the bands have restrictive contracts.. saying that, half of them would end up full of wee, flying over me while I'm taking pictures anyway.. so I knock that idea on the head.</p><p> </p><p>While it's been a pretty uneventful day (and I'm sure it'll carry on throughout the week, given he can't get out of bed while hooked up to this drain), I wonder if it's going to delay his radiotherapy.. he's supposed to be having his mask moulded on Wednesday, and that's at the Queen Elizabeth hospital in Edgbaston... it won't be easy getting him there, or having the mould made if he's still hooked up to it. We'll see. For now though, it's been a quiet day... which I'm thankful for.</p><p> </p>http://asenseoftumour.blogspot.com/2011/03/in-search-of-elusive.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-1978080058476617894Sat, 05 Feb 2011 22:49:00 +00002012-10-05T22:16:48.539+01:00The Remedy (I won't worry)<p>Saturday 5 February 2011</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0854.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TVpsMw1vePI/AAAAAAAAAGA/-gdJSgiZ1oc/IMG_0854.JPG?imgmax=800" alt="Back to reality..." width="500" height="500" border="0" /></p><p>After I left last night, the doctor needed to put another stitch into the back of Joel's head.. fortunately this time, with the local anaesthetic... Then they told Louise that Joel would be prepped for surgery first thing to have a lumbar drain inserted into the base of his spine. This would be to hopefully relieve pressure from the build up of CSF at the back of his head and reduce the risk of his wound opening up again.. so the theory is that if the wound on the back of his head has less pressure, it will heal quicker and stronger.. Lets hope so.. the drain looks awful and no matter how many cushioned dressings they pad around his waist, it still looks bloody uncomfortable.. I imagine he'll be so uncomfortable on his back that at least he'll give his iPod a break.</p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0849.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TVpsSJwXXHI/AAAAAAAAAGE/AAKucfxVrks/IMG_0849.JPG?imgmax=800" alt="No such luck..." width="500" height="500" border="0" /></p><p>I should have guessed better.</p><p>Aunty Marion and Joyce came with me today. Louise said they wanted me to give them a lift so they could go and walk around Birmingham for a couple of hours, then come to the hospital later.. in the meantime, Louise would take Eve out for an hour, and I would look after Joel.</p><p>I gave Eve £40 in cash.. first time I've given her so much money to take out with her - but I told her - £10 to treat herself to something nice, £10 to treat Joel to something nice, £10 for mommy to treat herself to something nice, and £10 for her to pick something nice for me.</p><p>Two and a half hours later, Marion and Joyce return from their walk around the town.. they sit in relative silence... occasionally breaking into conversation about people they know, or to tease and tickle Joel. I'm not very talkative... I don't have anything to tell them - nothing they don't already know at least... it's an uncomfortable silence.. I can sense an atmosphere of three people struggling to think of anything positive to say.</p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0843.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TVpsfpizKZI/AAAAAAAAAGM/jSHlwQUNBF8/IMG_0843.JPG?imgmax=800" alt="Hinge and Bracket" width="500" height="500" border="0" /><em>'Hinge and Bracket'</em></p><p>I take a snapshot... I think I get away without being noticed.. The photo says it all really, and wasn't posed, however much it looks like it..... I look at the photo just after taking it and can't stop giggling.. It reminds me of Hinge and Bracket.. (http://tinyurl.com/6l5jtfp)</p><p>Anyway, for those wondering what they look like - that's Marion on the left.. Joyce is on the right, looking like she's just come from a bowling league match. They're loveable... They won't mind me posting the photo on Facebook..... and they'll see the funny side of the 'Hinge and Bracket' comment.....</p><p>...At least, I hope they do.</p><p>It's not long before Louise and Eve return to the ward... Eve has new shoes. Not one pair, not two pairs, but several pairs of shoes.. new school shoes, and new trainers.. (£8 - £20 off, so I don't mind!). There's a box of Lego for Joel (Bargain if that cost &lt; £10!), a book for mommy (£7.99 RRP - but half price at W.H. Smiths...). Nothing for me.. Nada. Diddly squat. I was looking forward to a pizza, or a box of krispy kremes, or at the very least, a colouring book... :) Thanks Eve.... I'll remember that. Now I decide I <strong>will</strong> take umbrage at the fact she's had those trainers, even with £20 off.....</p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0845.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TVpsZZI9IqI/AAAAAAAAAGI/0-wO7kSAQuA/IMG_0845.JPG?imgmax=800" alt="IMG 0845" width="500" height="500" border="0" /><em>Where's MY present??</em></p><p>Louise bought Joel a new lego model - a Lego Creator Aeroplane... with LED lights that actually glow! It's getting late in the day, and if there's any hope of him getting to sleep tonight, he'd better get started on it.</p><p>Surprisingly, he's lying on his back for much of the day - albeit the occasional wince as he turns and pulls the drain somewhere along the line... I hope it holds.. all these tubes connected to him.. he really is like something from Avatar, but not as big, or blue.</p><p>Our next door neighbour had dropped a parcel in for us as well on the morning.. she'd bought some Lego for Joel as well. I think we should rename Joel "Goel".. a decent anagram I feel. Unfortunately, he's already got this lego model - from Toy Story, but he isn't bothered at all at that fact - he enjoys putting it together again, and we'd forgotten that it's friction powered as well.. Va-Va-Voom!! I can picture lots of injuries on the ward as a result of this lego zooming around the floor.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0838.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TVpskEsSZ7I/AAAAAAAAAGQ/igTkDQ18X80/IMG_0838.JPG?imgmax=800" alt="IMG 0838" width="500" height="500" border="0" /></p><p> </p><p>The registrar comes to talk to us. It looks like Joel is going to be in for upto 10 more days... This isn't good news. Joel decides to start his Lego aeroplane, against our advice, but with us being so close to the onset of a strop, we let him open it, even though it's already well past his bed time. He makes good progress, but starts to get frustrated after a while - his fine motor control still nowhere near normal.</p><p>He's got over half way on the model and he's obviously too tired to continue.. we take it off him, put it on one side and before long he's fast asleep. Louise and I chat. We're both terrified, and crying and the thought of what future lay ahead. We hope the drain works, and I get worried about it causing the cancer to spread.. Louise assures me it won't, but then we continue talking and worrying about his quality of life at the end of his treatment.....</p><p>I start crying, wondering if he'll actually reach the end of it. I'm a 'glass is half empty' kind of guy.. not always, sometimes I'm optimistic - but most of the time - I tend to look at the negative side of things. It's an awful trait.</p><p>I have a very good friend, Stuart, who follows these 'positive' life coaching courses and workshops.. I've never been interested in going along to one - I always feel like they're run by charlatans who just have the gift of the gab (that's not a slur on them, it's just my prejudiced viewpoint - although I don't doubt there ARE people taking advantage of vulnerable souls, just like any other profession), but I admire Stuart's positive outlook on everything.. At this moment, I wish I could see the world in the same light that Stuart does.. but I don't have the strength.</p><p>People have been saying prayers for Joel.. and we appreciate them - yet at the same time, we question the value of the prayers... after all, what kind of God would serve this disease on Joel in the first place? What has he done to deserve it?</p><p>Perhaps it's a test for Joel? I can't imagine it would be one for Louise and I - that would be like using a child as a human shield. Bizarre that I don't practice religion or believe in God.. (I'm agnostic, so I don't dispute God either), yet here I am questioning whether it's a test from God... I'm not particularly keen on the fact that I'm reaching out to 'God' for answers, a cure, and someone to blame. That's not who I am.. yet I find myself in that uncomfortable position.</p>http://asenseoftumour.blogspot.com/2011/02/remedy-i-won-worry.htmlnoreply@blogger.com (Jason Sheldon)3tag:blogger.com,1999:blog-3292925915106829601.post-3245324076826856713Fri, 04 Feb 2011 23:33:00 +00002012-10-05T22:16:41.274+01:00TGIF<p>Friday 4 February 2011</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0841.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TVmEc4bFOsI/AAAAAAAAAFg/IxPeVgMGwCM/IMG_0841.JPG?imgmax=800" alt="Mmmm.. Coffee" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>Tea.. Best Drink Of The Day.. except for a 2-pump Caramel Latte from Starbucks</em></p><p style="text-align: left;">This morning, Joel is due to see the opthamologist, Dr. Barry. His name is John Barry. This struck me as rather poignant as I'd read earlier that day that the composer John Barry (James Bond &amp; Midnight Cowboy themes among others) had died recently. This John Barry however is quite young. He looks too young to be qualified actually, but he knows his stuff and is very good with Joel.</p><p style="text-align: left;">His appointment is at 8.45 - and as I'm dropping Eve off at that time, it means I won't be able to be with him.. so I decide to join friends at Starbucks in Walsall for our (what once was) usual Friday coffee morning. I haven't had a good chat with them for a few weeks, and they all want to know how Joel is doing.</p><p style="text-align: left;">As I'm about to leave, one of the parents comes up to me and goes to hug me.. I'm a bit taken aback, considering his build - and I was expecting no more than a handshake. Still, perhaps he's not afraid to show his feminine side and wants to give me a good caring hug and pat on the back.</p><p style="text-align: left;">As he approaches closer, he grabs my hand and pulls me toward him.. "Hello, Steady tiger..." I thought. He shoves an envelope in my hand and says "We really don't know how else to help, but know that you'll be needing this...".</p><p style="text-align: left;">I can tell what's in the envelope, and I offer it back.. "No, please, you shouldn't...." They tell me it'll help with immediate needs.. they're right.. I've only had one paid job since the first week of January, and being self employed, I have no sick pay or holiday entitlement.. I don't work, I don't get paid, and being a freelance photographer - I only get paid when pictures get published so even if I do work, I'm not guaranteed income. Louise has said she's unlikely to go back to work for 12 months and is looking for her insurance to pay for someone to cover her work.... My main worry is not so much lack of my income in the short term, but that I may lose my regular clients who still need a supply of photos in the long term.. I need to get back to work but I'm having to be picky about what I choose to do.. not a comfortable position to be in... Hopefully Joel will be discharged again tonight if the wound has healed properly.. fingers crossed. I've got a commission to shoot a band on Sunday for News of the World, and I'm shooting Skunk Anansie tonight for the Express and Star... I need to get out and work - if only for my sanity. I'm not really sure if I'll be able to concentrate, but it'll take my mind off things if nothing else.</p><p style="text-align: left;"> </p><p style="text-align: left;">I get to the hospital for about 10.45... I'm hoping that the carpark will be a little emptier - but when I arrive I find that it's just as full as before.. Level 5 it is then.. My knees are killing me, so I park the car on the roof top again and hobble down the stairs like John Wayne. I'm consciously thinking about Joel as I'm groaning as I'm going down the concrete stairwell.. My knees feel like someone is jamming a hot knife under the knee caps.. it's very painful.. then I think of Joel having stitches with no anaesthetic and not even wincing.. I'm a wuss with a low pain threshold.. very low.</p><p style="text-align: left;"> </p><p style="text-align: left;">When I arrive at Joel's bed, he's playing Angry Birds again.. I'd bought him a new case for his iPod during the "M&amp;S" trip on Tuesday.. £25 for a piece of plastic that probably cost less than 7p to manufacture. I'd promised him one when I bought his iPod, but I couldn't find one in time for when the iPod arrived, so I bought him a red case just for protection, and intended to buy an Angry Birds case as soon as... Hope he doesn't go off it any time soon. I wonder what it's recycle value is worth?</p><p style="text-align: left;">Joel is all smiles - he's seen the opthamologist who is very pleased with the progress of his recovery. The haemorrhaging in his eyes is healing well and his field of vision is getting much better - the blind spots are getting smaller. His 'squint' is not so obvious (though he still has the odd off day), so it seems the pressure is reducing nicely.</p><p style="text-align: left;">Colin brings Joel a sheet to order tomorrows meals.. I take a look at it and burst out laughing. There seems to be a difficulty in aligning the original sheet on the glass, and the results are often hilarious.. today though, hilarious, and slightly disturbing. I don't think I'd have much of an appetite after reading this menu....</p><p style="text-align: left;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0825.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TVmEfJ_5u-I/AAAAAAAAAFk/7m-84I3Rerk/IMG_0825.JPG?imgmax=800" alt="Whaterole???" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>At least it comes with vegetables instead of grapes.</em></p><p style="text-align: left;"> </p><p>After lunch, Hollie comes to take Joel for some physio at the Gym and sets up some skittles for him in a ten-pin fashion. There's only 6 'skittles' (wooden toys shaped roughly like animals), and he's lined up on a crash mat ready to get a strike... he misses.</p><p>He tries again.. and misses. He's about 4 feet away, and misses again. I notice his eye is turning in again, and he's having trouble kneeling up straight.. it's fair enough I suppose, he's on a crash mat - hardly the most stable surface to kneel on.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0826.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TVmEg16LzYI/AAAAAAAAAFo/tJv7ScCVqiw/IMG_0826.JPG?imgmax=800" alt="IMG 0826" width="500" height="500" border="0" /></p><p> </p><p>He's really struggling to get the balls to go straight.. they're going all over the gym.... but he persists. My knees are killing me from having to run after the stray balls.. I suppose personally I've always been very competitive, but where my kids are concerned, I've always emphasised it's the taking part that counts... (But winning is a bonus!).. with my knees falling apart though, I'm willing him with all my strength to knock them all down with the next ball so we can move on to another exercise with less damage to my patella (4 weeks at the hospital and I'm getting used to the medical terminology now).</p><p>Success! Next ball, several of the skittles suffer a knock down... Joel is rocking now - his balance is great, his aim is getting better with every shot - both right hand AND left hand.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0829.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TVmEijvAppI/AAAAAAAAAFs/IUNE92YZfso/IMG_0829.JPG?imgmax=800" alt="IMG 0829" width="500" height="500" border="0" /></p><p>Next he gets to go on the scooters - his favourite part of his physio... He has a race with Louise and wins.. now we're rocking...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0834.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TVmEky99QzI/AAAAAAAAAFw/QPTetoryg70/IMG_0834.JPG?imgmax=800" alt="IMG 0834" width="500" height="500" border="0" /></p><p>Physio has gone really well, and Joel said he'd like to go to the playground.. It's cold outside, and I'm not looking forward to it, but I grin and bear it.. wrap up warm, and we head down to the playground.. Joel has a walk around the pirate ship thing (climbing wall/rope walk/slide/activity centre combo.. there's probably a shorter name in the catalogue), and then we play a little of Andy's Slam Dunk.. basically, basketball with various tubes and buckets that lead to different amount of points.. We're having fun with it.. Joel is practicing his throwing and while trying an overhead throw, the ball hits the wall and flies straight back into his face. Perhaps this isn't the safest sport after all.. even solo.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0836.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TVmEoBX1MVI/AAAAAAAAAF0/LzCle0L2gGU/IMG_0836.JPG?imgmax=800" alt="IMG 0836" width="500" height="500" border="0" /></p><p> </p><p>We move to the real basketball hoop over the other side of the playground and spend about 15 minutes shooting hoops.. Joel is struggling to get the ball high enough, and eventually he gets it high enough... just not at the right angle. He carries on, determined to score a basket.. but fails. He did magnificent though, as far as I'm concerned... so I treat him to a fruit pastille ice lolly. It's been a very good day today and Joel has been on top form...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0837.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TVmEqLjbnhI/AAAAAAAAAF4/OQgaIf7d1-o/IMG_0837.JPG?imgmax=800" alt="IMG 0837" width="500" height="500" border="0" /></p><p>Come tea time however, things start to go pear shaped... I'm giving Joel a hug as I'm working tonight and need to go shortly.. he's lying in bed and I'm sat in front of him with my arms around him. I'm already emotional and he turns to face his mom.. then I feel something wet on my hand.. Joel turns his head to the ceiling.. "Something just dripped on me daddy...".. I instinctively look up too, in the same way that you can get a crowd of people to stare at the sky by just standing there yourself...). Then suddenly it dawns on me, I look at the back of his head, and there's a glistening drop of CSF on his hair... then a little squirt hits my hand again.. I almost wretch...</p><p>"Good god!" I shout.. and reel at the fact that I've just quite loudly declared that something is drastically wrong... I hope Joel doesn't get frightened. Louise rushes to Joel's nurse and tells her that his CSF is leaking again. This is NOT what we wanted to happen. Apart from dreading having a shunt or a drain inserted, I'm worried about any delay to his radiotherapy and chemotherapy, increasing the risk of the tumour growing again, or spreading.</p><p>The nurse comes over, looks at it and calls for the doctor who arrives quite quickly.. he draws the curtains and looks at the back of Joel's head. It's leaking CSF quite badly again. The surgeon, Mr. Solanki, is not in - and the doctor needs to see if Mr. Solanki wants a drain or a shunt, or to just stitch the wound again... They put a pressure bandage on until they have more news.. I have to go.. It's too late for me to get someone else to cover my job for me and I can't afford to lose this client. Joel isn't in pain... but I'm still torn between staying or going... I'm questioning myself.. telling me I shouldn't go.. then worrying myself about losing an important revenue source... If only I had more time I could try and get someone else to cover the gig for me, but I only have 20 minutes.... not enough time.</p><p>I decide Joel is in good hands, a safe place, and has his mom AND a doctor by his side.. so I reluctantly head to the Academy for the gig..</p><p>I get to the gig just in time for the main act.. I don't have a particularly good time of it.. I can't keep my mind on the job, as hard as I try.... I head home, feeling very guilty that I didn't stay.. but what could I have done if I'd have been there? I know the answer is 'nothing', but it still plays on my mind.</p><p> </p><p> </p><p> </p><p> </p>http://asenseoftumour.blogspot.com/2011/02/tgif.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-6591062112582925272Thu, 03 Feb 2011 23:30:00 +00002012-10-05T22:16:33.654+01:00The return of Nurse Ratched....<p>Thursday 3rd February, 2011</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0815.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TVBfGpPvH7I/AAAAAAAAAFM/A-z-kFjh8SU/IMG_0815.JPG?imgmax=800" alt="Helloooooo!" width="500" height="500" border="0" /></p><p>I arrive at the hospital.. Joel is doing ok, he's comfortable, and smiles when he see's me. It's a good start to the day when he smiles. I give kisses all round (well, to Joel and Louise - I don't think the nurses would like it, and as for the other patients...)</p><p>I grab the key for the kitchen cupboard and go to make a drink for me and Louise.. on the way to the kitchen, I see 'Nurse X' by one of the isolation rooms. I smile and say good morning. She ignores me, and turns her back to me and carries on writing. Miserable toad. We've been watching her with other patients and she has a terrible bedside manner.. I'm not sure she's cut out for working with children. In fact, I'm not sure she's cut out for working in medicine. Hair Salon maybe...</p><p> </p><p>I make a cup of tea and dwell on the walk back to Marks and Spencers later.. I'd found my receipt for the cookies in a carrier bag in the kitchen cupboard yesterday (I've been storing plastic bags.... I think I've become my nan while in hospital). I'd called them yesterday afternoon and spent about 15 minutes on hold waiting for an operator, and then asking for the manager of the food department, I was put through to what seemed like a shelf stacker. They certainly didn't have the telephone manner I'd expect from a manager.</p><p>The conversation yesterday went something like:</p><p>Me: "Hello, I wonder if you could help me - I bought some lemon meringue cookies on Tuesday from your branch and....."</p><p>Them: "Hang on... &lt;muffled: no, I think they go over there somewhere, hang on.. no, it's a customer&gt;... Hello?"</p><p>Me: "Hello, I bought some lemon meringue cook..."</p><p>Them: "&lt;muffled: No, over there.. I dunno...&gt; Hello - Sorry, can I help you?"</p><p>Me: "I bought some lemon meringue cookies on Tuesday, came to eat them yesterday to find out the best before date was yesterday as well, and the disp....."</p><p>Them: "Well that's ok isn't it?"</p><p>Me: "No - the display until date was 19/01/11!"</p><p>Them: "Well it's only the 2nd, what's wrong with that?"</p><p>Me: "It's the 2nd of February... these have a display until date of 19th JANUARY!!"</p><p>Them: "JANUARY??? Blimey.. Well bring them back and we'll sort it out"</p><p> </p><p>Apart from being ignored while he chatted to someone else in the background for the first part of the call, I didn't hold out much hope that anything would be done... so the thought of having to make another trip into town today just to return some stale cookies wasn't something I was looking forward too - especially considering the weather didn't look very nice, and it was VERY windy! I also had better things to do with my time than have to trapse through town on an unnecessary trip.</p><p>Joel has done really well this morning, and has done some more homework exercises on the BBC Bitesize website. He's doing really well on these - even beating the hardest levels... He looks great in himself, and he's proving to be cheeky with his humour still.. he's very sarcastic at times, which is annoying, but cute and hilarious at the same time... He's charming with it, not nasty.</p><p>I decide it's time.. I grab my scarf, my gloves, and my coat.. and the bag with the stale cookies, check the receipt, and head on into town for the showdown. I'm miserable. I hate being shortchanged on customer service, but this is Marks and Spencers we're talking about.... what could go wrong?</p><p>I return to the store and head to the food department hoping to find the manager. I have no luck, but having walked around looking for a manager, I browsed the aisle where the cookies originally were. The shelf was empty - they'd removed the whole stock of Lemon Meringue cookies... perhaps he WAS listening after all then when I called last night.</p><p>I carried on walking around the department and eventually got fed up of looking for a manager - so I approached a middle aged lady unpacking chilled foods.. at least a middle aged lady might be a bit more helpful than a young lad new to the job, I thought.</p><p>"Excuse me", I asked, "Could you tell me where I can find the manager please?"</p><p>"Can I help?" she quizzed.. "I'm a supervisor".</p><p>Umm.. a supervisor of what, I thought.. you're stacking shelves..</p><p>"I'd really like to speak to the manager about some cookies I bought which are way past their Display Until date"... she took them from me, looked at them and said "Well we have 3 day sock checks, it shouldn't get past 3 days days" as if in disbelief at my claim that they were still on display TWO WEEKS after their Display Until date. She saw the date on the packet and said "Oh, but this looks like it's been missed for all 3 checks!". No shit!</p><p>She took me to a till, asked me for my receipt, and asked if I wanted something else instead... I said no, and she handed me the cost of the packet back, having crossed it off my receipt. "There you go love, I'll make sure the relevant people are told"...</p><p> </p><p>That was it??? No "Sorry for your trouble", still no sign of a manager.. I have a feeling that it was the end of the matter completely.. I doubt a manager would even find out about it.. I don't mean to be sceptical or assume that they'd be covering each other's back there, but it smacked to me of trying to sweep it under the carpet.. I still can't believe I didn't even get an apology!</p><p>TWO WEEKS past their Display Until date. Yuk.</p><p> </p><p>I return back to the hospital with my One pound Seventy whatever it was and a right grump. Not even an apology. Disgusting. TWO WEEKS!!!</p><p>I see Joel, and he smiles at my return. It warms my heart.. then I think of the time M&amp;S have just wasted and I'm eating away inside.</p><p>While I've been away, Jill came to take Joel to do some baking which he missed yesterday (thanks to Nurse X not changing his dressing!!). He's been baking gingerbread rabbits! I can't wait to see them - the cookies he made last time were delicious, and even met with Eve's Royal Seal of Approval!</p><p>Joel has to wait for Jill to finish the 'hot hot hot' bit and for them to cool down before we can eat them, so in the mean time, I take Joel into the playroom (actually, he specifically asked for ME to take him to the playroom - ME! Not mommy, but ME!! Perhaps his condition is much worse than I'd thought... he NEVER wants me to do anything with him when he's got the option of mommy being there.. anyway, we head to the playroom and we set up those little 'abacus' type things with the bright coloured 'things'. I have no idea what they're called.. they're pretty, but can't imagine they'd be much use for shopkeeping... makes you question why they're all over the tills at Mothercare... stick to barcodes and scanners I reckon.</p><p>We have some great fun.. Joel is playful and the sun shines..</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0817.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TVBfIQvVt8I/AAAAAAAAAFQ/nor2iPt6LaA/IMG_0817.JPG?imgmax=800" alt="Abacus?" width="500" height="500" border="0" /></p><p> </p><p>After a short while, Joel decides he wants to go back to bed... and that I can tidy the play room up.. thanks matey. I duly oblige. Normally I'd insist he tidys things up after he's been playing with them, but I'm not going to be that cruel.. Not today anyway. :)</p><p>Joel is keeping his spirits up... and from nowhere comes "I wonder where my gingerbread rabbits are?". Within 30 seconds, and as if by magic, Jill appears carrying a small bag. We still don't know if Joel had seen her hovering around the ward, but the timing was impeccable.. she approaches Joel and says "I nearly forgot about these Joel". They look great.. Louise tells me that when Joel was sorting the ingredients, he had to count the chocolate chips that he was using for the face. Being the cheeky little scamp that he is, he asked for more as he wanted to do a neck tie, a scarf, and a big smile. Clever boy. Mommy notices two chocolate drops stuck together and says "Oh, look at these.. you could use these for a tail!". Joel gingerly picks them up, studies them, lifts his head to the sky and like a Roman emperor being fed grapes, offers the large mutant chocolate drop to his open mouth before declaring "Or, I could just eat it..." as he chomps away.</p><p>Before long, there are only two cookies left.. so I decide I'd better get a shot now while I still can...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0821.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TVBfJ28NoQI/AAAAAAAAAFU/Y02hUblDESU/IMG_0821.JPG?imgmax=800" alt="Hare today, Gone Tomorrow" width="500" height="500" border="0" /></p><p>One rabbit has a huge grin, nose, eyes, and a belly button. I'm not quite sure what the other one has. I think it's either myxomatosis or a David Beckham style tattoo... either way, they taste delicious. So, even if Joel doesn't make it as a vet, at least he has a possible future with gingerbread rabbits.</p><p> </p><p>Joel is booked in to see Dr. Barry, the optometrist, again first thing in the morning.. 8.45. I'll still be at school dropping Eve off at that time, so I tell Louise I think I may see if Atif and some of the regulars are going to Starbucks for coffee... makes no sense in me rushing to Birmingham only to get to an empty bed and sit there for an hour... Besides which, it'll give me chance to update everyone on Joel's progress rather than one by one in the school yard. Someone asked me recently, "You must get fed up with everyone coming up to you asking how Joel is? How is he?". I replied that I don't.. it's natural for people to want to ask how he is, and I really don't mind people asking about him - it shows they care about him and of course how Louise and I are coping... Then one by one, five other people ask how Joel is.. and I repeat the same story.. Perhaps I should get a spokesperson.. I wonder if Max Clifford would do a discount? Perhaps I should just update the blog a bit more frequently.</p><p>Anyway - please don't be afraid to ask how he is - I really don't mind people asking.. I just thought it funny, that's all...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0823.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TVBfLaIC6_I/AAAAAAAAAFY/bZR-M6entX0/IMG_0823.JPG?imgmax=800" alt="Goodnight my angel, close your eyes." width="500" height="500" border="0" /></p><p>I get home quite late.. I'm missing Joel all the way home. Eve is fast asleep in my bed again - starfish mode. I cover her back up with the quilt and the blanket, she wakes up, smiles at me and puts her arm around me for a hug. I rub her back for a while and she carries on snoring. She's lying right next to me, and I'm missing her. Funny how you can still miss someone when they're right next to you. I know she's missing us too.. at least though, she isn't crying as much now.. but that saddens me.. she's growing up too fast and unfortunately I worry she's going to get too independent too fast.. I just hope she knows how much we really do care about her....</p><p> </p><p> </p>http://asenseoftumour.blogspot.com/2011/02/return-of-nurse-ratched.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-7426300126123359068Wed, 02 Feb 2011 23:27:00 +00002012-10-05T22:16:25.998+01:00Tantrums and Tiaras...<p>Wednesday, 2nd Feb 2011</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0803.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TVArf4LsAmI/AAAAAAAAAE8/lDAPuzrj9zE/IMG_0803.JPG?imgmax=800" alt="On Top of the world..." width="500" height="500" border="0" /></p><p>I arrive at the hospital at about 9.15 - quite early for me... I'm a little grumpy as I hardly slept last night - after finding it difficult to get back to sleep past 3am and then when I did, being woken at 6am every ten minutes by Eve asking "What time is it?" "What time is it now?" "What about now?". I swear, at one point, I'm sure I heard her say "Hey Apple!". Perhaps that's just my lack of sleep giving me weird hallucinations.</p><p>The staff carpark (where parents with parking permits have to park) is showing as 'Full'. The swipe card lets me in anyway.. and yes, I struggle to find a space on level 1. And level 2.. 3, 4, and 5. As I go round and round up the ramps, I'm having to dodge inconsiderately parked cars on the ramps... where they've parked in the pedestrian walkways. This carpark hasn't had a working lift for over 8 years according to one member of staff, yet they expect parents with kids in wheelchairs to use this one instead of the carpark at the front of the hospital which has a ramp into the building.</p><p>I reach the top of the carpark, level 5 &amp; 6. There are spaces.. but the ledge barrier goes up to my hip. It's high enough to prevent me driving off the roof, but as I reverse the car up against the wall, then go to the boot to get my bag out, I open it and instinctively lean back to avoid the boot swinging up and hitting me in the jaw. WHOAA!!!!!!!!!!!</p><p>I realise how far I'm leaning back OVER the barrier, turn around and I seriously must have turned green. The photo above is the view from behind my car. Scary. Still, at least I'm close to an A&amp;E department, and from that height, should I fall, I might resemble a small child and be accepted for treatment.</p><p> </p><p>I arrive on ward just after the doctors have done their ward round. Mr. Solanki has asked Joel's nurse to change his dressing and put on a new bandage. According to Joel's chart, he's due his antibiotic via the syringe driver at 2pm. Nothing to worry about.</p><p>I make a drink for me and Louise, then she starts tucking into the lemon meringue cookies I bought yesterday. She has a look on her face - sort of Gillian McKeith vs. Kim Woodburn. "These are horrible.. they're not suppose to taste like this are they?". I ask her what's wrong with them and she say's they taste stale - but soggy rather than 'crispy' stale.. She looks at the best before date... Today.</p><p>"They should be ok, they're in date.. you always tell me stuff is ok even the day after!" (she tells me this repeatedly, knowing full well I can't eat anything by 5pm on the 'best before date' for fear of food poisoning, mould, or fly lavae instantly appearing.)</p><p>Then we notice the packet has a 'Display Until' date, which reads : <em>Display Until 19/01/11</em>.</p><p>Yuk. How can a shop with a reputation for quality such as M&amp;S have such lax stock control? I'm definitely going to complain about that.. 1 day past the 'Display Until' date is bad enough (but I'd accept it), but we're talking 13 days - <strong>Thirteen days</strong> of somebody not being bothered to do their job and do stock rotation.</p><p>I wonder what I've done with my receipt.. It's not in my wallet. Typical - only bought them yesterday, and I think I've thrown the receipt away.. damn it.</p><p> </p><p>It's nearly lunchtime - Joel is still in his old dressing from when he was admitted on Monday. It's slipped a bit so it's not actually covering the wound, but just off to the side of it. Why hasn't the nurse changed it and put a bandage on? Rebecca the physiotherapist visits Joel and needs to do some physio with him, but as he's waiting for his dressing to be changed, she asks if we can come down to the gym at about 1.15 - by which time it should be done, and we can get back in time for his antibiotic delivery at 2pm.</p><p>Joel has his lunch. Still no sign of the nurse for Joel. We've hardly seen her all morning, yet she's only got 4 patients to look after. She must be very busy, so we don't argue or chase it up.</p><p>1.10pm and we need to go to physio.. Joel still has the same wonky dressing on with no bandage. There's still no sign of his nurse.</p><p>While we wait for Rebecca to see us into the gym, Joel is taking HUNDREDS of photos on his iPod.. he's laughing, and being silly with us.. it's great... I try to take a shot and Joel refuses to co-operate.. so I trick him into laughing while I'm ready to take a snapshot.. It almost works.. he moves at the last minute and I get a lovely sharp shot of the bin behind him... but the laughter makes it a 'keeper' for me.</p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0808.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TVArjMVi1XI/AAAAAAAAAFA/Mad6OGtMGtQ/IMG_0808.JPG?imgmax=800" alt="IMG_0808.JPG" width="500" height="500" border="0" /></p><p> </p><p>Rebecca runs through a couple of preliminary checks with Joel on the big huge physio bed. She tests his tendon reactions in his ankle, heel, and knees... and as he lays back on the bed and gets up to put his shoes back on to start his exercises, we notice the paper on the pillow is wet. Joel is leaking CSF again. Rebecca cancels the physio session and we head back up to the ward. I'm gutted, and worried about the leak. I really don't want Joel to have a shunt... and I'm angry that the nurse hasn't followed the doctors instructions yet, some four hours later.</p><p>2pm comes... and goes. No antibiotics. I go and make a cup of tea. I see Joel's nurse on the way.. she's blow drying a patient's hair while the patient's parent/guardian stands by and watches. Lovely. Welcome to your local NHS Babysitting Service - Now with added Hairdressing.</p><p>Why is Joel's nurse drying someone's hair instead of tending to medical needs of her patients? Why hasn't she changed Joel's dressing and bandage yet? She's only got 4 patients to look after and so far she's done bugger all for Joel. Every time she tries to do his obs, Joel gets all frustrated - she has NO bedside manner or rapport with him. Instead of being nice and trying to calm him down or have fun with him, she chastises him, then turns it on us - patronising us by saying "I can't do his obs when he's behaving like this!" - as if it's OUR fault.. she may as well just say "Will you control your child???". Well no - he's been fine with every nurse he's had so far, because they've all engaged with him and spoken to him like he's a nervous 6 year old boy in hospital. She's treating him like a snotty teenager hanging around the corner shop.</p><p>By tea time, Joel wants to go to the restaurant again. It's nice being able to go as a family... though Joel has already eaten his tea at his bed, it gives Louise and I a chance to go and sit at a table with a hot meal, and Joel can have a packet of fruit pastilles. It's 6.30pm. He's not had his antibiotics yet which were due at 2pm. Neither has he had his dressing changed and a fresh bandage. We wait before going to the restaurant as we don't want to go until Joel has had his antibiotics.. The nurse comes with the machine and sets Joel up for his antibiotics. Great - over 4 hours late, and just as we want to go to the restaurant. 30 minutes later his drip has finished and we can go to the restaurant. We get everything ready, tidy up Steve &amp; Backshall (Joel's nickname for his Hickman line) and head down to the restaurant. We get there at 7.48pm... to find it shuts at 7.45pm.</p><p>Fantastic.</p><p> </p><p>While we have a drawer full of sweets to quell the inevitable tantrum due to the lack of fruit pastilles from the restaurant, it still means WE go hungry... I decide to have a ready meal from the fridge.. I double check the date after the cookie episode, and go for the Spicy Meatballs with spaghetti. I follow the microwave instructions to the letter, and the meatballs look horrible. they're bright pink inside, yet scorching. Then I see a bit that doesn't look meaty, and reminds me that Joel is in the neurosurgical ward. I decide not to risk it, and leave that bit on the side of the plate. The rest of the meatballs don't fare much better to be honest. I have a bad feeling about this.</p><p> </p><p>About 8pm after the shift change, Joel's new nurse sorts out the dressing and bandage that was requested about 11 hours ago by Dr. Solanki. With 4 patients to look after during the day, the previous nurse must have been rushed off her poor little feet to not be able to sort that out.... or to be able to get Joel's blood pressure due to his 'unacceptable behaviour'.</p><p>Funnily enough, the new nurse manages to get his blood pressure first time.. the difference between her and the previous nurse? A nice attitude, friendly, and spoke to him like a child having fun... instead of someone who found their job an unrewarding chore.</p><p>I'll call the 'nasty' nurse "Nurse X" in future....</p><p> </p>http://asenseoftumour.blogspot.com/2011/02/tantrums-and-tiaras.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-6737853936276654893Tue, 01 Feb 2011 23:22:00 +00002012-10-05T22:16:19.085+01:00Ruby Tuesday...<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0810.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TUwwXhozmTI/AAAAAAAAAE0/qQMeCwkW6v8/IMG_0810.JPG?imgmax=800" alt="Angry Kid" width="500" height="500" border="0" /></p><p>Tuesday. Wake up feeling terrible. One of those "can't be bothered" moods. After yesterday, I'm feeling physically and emotionally exhausted.. I struggle to get myself out of bed, showered, dressed and ready to take Eve to school. I'm all over the place. I drop Eve off at school and head to the hospital.</p><p>Louise hasn't called, so I should think everything is ok with Joel, but I can't be positive. Perhaps her phone battery has died? Perhaps something has happened to Joel and she can't bring herself to call... Lots of thoughts go through my head, most of them induce fear in me.</p><p>I get to the hospital and the only parking space I can find is on the very top level.. my knees hurt, so I'm not looking forward to walking down the 5 flights of steps. I still can't believe the hospital give parents parking access to a multi-storey with a decommissioned lift and no wheelchair access.</p><p>I get half way down the staircase and my knee gives way.. I curse and it echos in the stairwell. For some reason I think about the fact that a ducks quack doesn't echo. I have no idea if that's true. I should bring one of the ducks in tomorrow to test the theory.. but regardless, my swearing does echo - that IS true.</p><p> </p><p>I get to the ward and I'm dreading arriving at the bay, unsure of what I'm going to find.. I get some strange looks from parents, and a few from nursing staff, a mixture of angry and sympathetic.. As I arrive at Bay 9, Louise is sat there, looking dishevelled. Joel is sat upright, and looks tired as well. He didn't sleep all night, and wailed loudly, constantly. The pressure bandage around his head from the night before was very tight, as you'd expect it to be, but we had no idea that his ears had been folded over during the bandaging, and not straightened out. It must have been really uncomfortable, and when the bandage was changed early this morning, the tips of his ears were bright red and crease marks have been left there where they were folded over. There was also indentation across his forehead when the bandage had marked his head.. no wonder he screamed all night long.</p><p> </p><p>The change of bandage around Joel's head was a welcome one.. he seemed much more relaxed now, but it wouldn't last long. He's currently nil by mouth, as he's booked for a CT Scan this morning and may need an operation this afternoon. They aren't sure why the CSF leak was so bad - they say it can leak a small amount, which is natural after these operations, but the severity of this leak might mean he needs a 'shunt' - either a <a href="http://en.wikipedia.org/wiki/Cerebral_shunt">Cerebral shunt</a> or a <a href="http://en.wikipedia.org/wiki/Lumbar-peritoneal_shunt">Lumbar-peritoneal shunt</a></p><p>The consultant really doesn't want to do this, as it increases the risk of infection and more seriously, increases the chances of brain damage.. although incredibly slim - it's still a chance he doesn't want to take.</p><p> </p><p>By late morning, Joel is getting low blood sugar, and getting stroppy with it. We have a kicking fit, a punching fit, and a screaming fit. We give the silent treatment.. it's hard, but we sit there and take it.. We don't raise our voices, but just tell him that it's not nice.</p><p>We need a few things from the shops, so I nip into the city centre and come back with some essentials.. plus a few not so essentials.. I bought some Marks &amp; Spencers cookies in the 2 for £2.50 offer - Lemon Meringue and Apple Crumble.. I bought some full on flavour Ham &amp; Mustard crisps, and some Chicken with Honey and Mustard Pasta Salad. Delish... Even better when you mix both together..</p><p>I post a letter for Louise, and head back to the hospital after a breath of relatively fresh air (as fresh as it can get when you're surrounded by cars, pigeons, seagulls, and dog faeces on the pavement).</p><p>Eventually, Joel is called for a CT scan and we head down to Radiology again. Joel seems to be in pain as he's shuffled into position on the scanner bed... but it looks like it's just hunger getting to him. He hasn't had a drink since before he was admitted to hospital last night, so you can imagine how irritated he feels.. Can you picture how you feel when you're really thirsty and crave a cool refreshing drink but have no access? Doesn't happen to me very often, but when it does, I'm incredibly agitated and stressed. I felt myself getting thirsty earlier, but refrained from having a drink out of respect for Joel - I didn't want to drink in front of him, as that would not only be unfair but would only exacerbate the situation. I also felt it unfair to be able to refresh myself, so sat there getting more irritated myself.. A stupid theory in hindsight, but I really felt selfish at being able to drink when he'd not had a drink for over 16 hours. His lips were pale and crisp - with texture of roast chicken skin.. I imagined a big smile would crack the skin of his lower lip - it looked painfully dehydrated.</p><p>CT Scan over, we return to the ward. Joel wants to go to the restaurant.. but while the nurse says it's shouldn't be a problem for us to go, we need to wait for the doctor to check the scan results to see if he needs the operation - otherwise he'll remain nil by mouth...</p><p> </p><p>Mr Solanki comes up to the ward and asks if we'd like to see the scans.. I get a bit anxious as it was almost like "Would you care to come and take a seat?".. but we go to the nurses station. Joel is wheeled behind the nurses desk and sits there keeping an eye on the ward. Given the chance, he'd pick the phone up and deal with any incoming calls.. we're focused on the monitor screen in front of us. Mr Solanki shows us the CT scan from today, side by side with a scan from last Friday, 28th. The difference is amazing - everything seems to be getting back to some kind of normality.. the ventricles closing up nicely.. though there are still some pockets of fluid, they're clearly reduced from the previous scan. But this doesn't answer the question we all want to know - why is it the CSF leaking, and is it likely to leak again?</p><p>Because the answer is unknown, they're going to keep him in until Friday at the earliest. Strangely, we both feel better at knowing this... we all feel safe. However, I realise that yesterday we'd visited the Birmingham City shop to buy Joel a shirt for him to get signed tomorrow when he's a mascot.. he's not going to be able to go to that.. we're gutted.. I write an email to the organisers of the trust who had arranged for Joel's Mascot package and explain that we can't make it, and wonder if it can be rescheduled. I don't hold out much hope - it's a £450 package, so I think it may be a blown chance. I'm sad for Joel. Still, at least he's got a new football, and a BCFC hat. And an extra large adult Away shirt (which he was going to take to be signed).. Just a pity he supports Liverpool.</p><p> </p><p>Talking of Liverpool - I'm laughing as I write this... My uncle John who comes to visit frequently came a few days ago with a present for Joel... Now a bit of background history - as a child, my uncle John would only have to touch any of my toys to pick up and look at - and that was it - the toy was doomed.. they would inevitably break a few hours afterward.. without fail, every toy or device of mine that he touched would break shortly after. He was a jinx. I love him dearly, but he's a jinx.</p><p>John bought Joel a Liverpool shirt with Torres on it.. Joel has always raved about Torres, and Liverpool... we didn't realise he liked football at all, but he reeled off all the Liverpool players, and told us he also likes Steven Gerrard... Well... What happens within 48 hours of John buying the shirt? Torres transfers to Chelsea for £50m. Sorry Joel, but John's curse continues.... I wonder if he still has the receipt?</p><p>Joel goes to sleep easy tonight.. hardly surprising given he didn't sleep last night. I get to sleep quite easy too... but wake at 3am and worry sick in case it's some kind of synchronicity.... is Joel ok? That makes it more difficult for me to get back to sleep.</p>http://asenseoftumour.blogspot.com/2011/02/ruby-tuesday.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-6315568488896461899Tue, 01 Feb 2011 02:34:00 +00002012-10-05T22:16:10.142+01:00I don't like Mondays...<p>Monday sees us at the Birmingham Children's Hospital again for a meeting with Dr. Martin English (Joel's oncologist) and Dr. Dan Ford (Radiologist) to discuss Joel's treatment regime.</p><p>Dr. Ford is fantastic with Joel - very down to earth, charming, funny, and really puts Joel at ease.. I guess it's because he deals with so many children, but you forget that and think that you're the only child he's ever dealt with...</p><p>Dr. English is amazing too - explains things very well, so I'm not expecting what hits us in this meeting.</p><p> </p><p>It's explained that Joel will need a course of radiotherapy every day for 6 weeks (8 cycles!) - and at least once a week, a dose of chemo as well. That means trips to the Queen Elizabeth hospital AND Birmingham Children's Hospital for quite some time.. The thought of the parking bill frightens me. Thankfully, they say there is a free car park next to the radiology clinic. Relief!</p><p>Then Dr. English tells us about the chemo.. he reels off the names of the chemicals and why they use those particular formula as opposed to others.. he's very thorough. Then he comes to the side effects.</p><p>I expected hair loss. No big deal.. it'll grow back.. maybe curly next time.. but at least Joel can wear a hat. I knew about stunted growth, but that's treatable with growth hormone... although Dr. English said that there can be a 1-2 inch shortness in the torso, while the arms and legs grow at their normal rate.. but that's hardly noticeable. I have trouble finding clothes to fit me anyway, so it can't make it any worse for Joel when he's older.</p><p>Then the bombshell I did not expect.</p><p> </p><p>It's likely that he'll be infertile due to the chemo.</p><p> </p><p> </p><p>I'd never thought about it. Louise said she expected it - I'd not seen it in anything I'd read. She said it's usually in very small print. Dr. English said that given Joel's age, it's too early to take a sperm sample now for storage to be used later... but possibly in 20 years with the progress of stem cell research, they may be able to generate some from tissue - but at the moment, it's unlikely. For now, he can't have children.</p><p>That came as a kick in the teeth. He might not want children.. some people don't do they? But my god, what if he wants them? I've talked to him so many times about when he grows up and has a family of his own, how much he'll love them - and then understand how much we love him... as a child, you never understand how much your parents really love you until you have kids of your own. NOTHING else matters in the world except them. He'll no doubt find a good wife, but will he ever feel that love for a child, the love that hurts so much because you can't explain what it means to them?</p><p>When we say to Eve, "Do you know how much we love you?" - she'll say "Infinity". When we ask how much she loves us, she'll reply "infinity plus 1". You can tell kids that they could never love you more than you love them.. but they won't understand.. not until they have their own.</p><p>I can't bear to think Joel might never have that - and not to know that despite how much I've shouted at him, I love him with all my heart, more than he'll ever know.</p><p>Then I realise Eve will never be an aunty.. not by blood at least. So many consequences.. but what is the alternative? To lose Joel? Not an option. Dr. Ford asks which of us would like to sign the consent form.. I motion to Louise that she can.. neither of us object.. why would we? We want them to do everything they can to get Joel better..</p><p> </p><p>After the meeting, I think I'm in a state of shock. I'm pretty numb.. don't really have any emotion.. I feel sad, but I haven't cried. Louise cried in the meeting. It hasn't hit me yet. It will.</p><p> </p><p>It's lunchtime, so we decide to eat at the restaurant at the hospital. The food is lovely.. Joel has a 'make your own salad' from the deli counter.. Louise has a baked potato.. I go for the steak and onion pie with chips and lots of brown sauce (has to be brown with that...).</p><p>We sit and eat, I'm sat opposite Joel. I look at him and then it all hits me. I make my excuse to go to the toilet where I cry in private. Not the most comforting place if I'm honest, but better than a restaurant. I calm myself and return to the table. We have a dessert, and again, I break down.. Louise holds my hand and comforts me. Joel just looks at me and smiles. What must he be thinking?? Does he understand what we've told him?</p><p> </p><p>We go home, and I fall asleep on the sofa.. it's only for 20 minutes before the phone rings, and it's nearly time for me to go and pick Eve up from school. On the phone, it's Mrs. Barnes, Joel's form teacher. She'd like to come and visit him "if that's ok".. it is - he's happy, he's doing ok, all things considered, so she says she'll make her way here straight from school.</p><p>I silently motion to Louise "Is she going to bring Eve home with her???" in a half joking manner..</p><p>When we get home, it's not long before Mrs. Barnes arrives. Joel is playing Angry Birds (as if you wouldn't guess by now), and seems oblivious to the fact his teacher is here.. she's brought him some work that he's missed out on (we encouraged it - not just because we don't want him falling behind, but also because it will cure his boredom.. he's always wanting to be challenged - and it would do him good to get off his iPod for a while!).</p><p>She also brings a few presents for him, and a card signed by everyone in his class. She also brings both Joel and Eve some chocolate. I try to steal a bit of Eve's chocolate, and she takes it upstairs to hide. I'll find it. At least I know which half of the house it's in.</p><p>When Mrs. Barnes leaves, I need to go have a rest before I leave for work. I'm shooting Roxy Music at the LG Arena, and after the problems on Saturday, this will be my first job since Joel's diagnosis. I'm looking forward to getting back to normality, or as close as it can be.. but I'm also not looking forward to it. I can't imagine I'll be as chipper with the people there as I am normally. Truth be told, I think I've turned into a miserable sod in the last week. Moreso than normal I should add.</p><p>I'm at the concert, the second support act is on, and I get a voicemail.. Why my phone never rings when someone is calling I don't know, but I got the voicemail. I go out into the concourse area so I can hear it, and it's Louise, in a panic, begging me to call her urgently.. She went to move Joel and his bandage was soaking wet.. he's leaking CSF from the wound where the tumour was removed. I panic.. I rush back to the pit and grab my cameras.. hastily telling Rob, the pit supervisor, that I've got to go... I call Louise back and she says she hasn't got enough petrol to get to A&amp;E.. She's waiting for her mom to come and look after Eve, so I tell her not to panic, that I'm on my way. She sounds really flustered. I get back to the cloakroom, pack my gear and leave. I hand my pass to the door staff and tell them that I'll try and arrange someone to come and cover the job for me. Thankfully, they know me well, and I manage to get someone reliable to go and get some shots so the paper won't go without. I just hope they run a pic so I can afford to pay the guy for covering it for me.</p><p>When I get home, I don't bother getting my camera gear out of the car - I bung Joel's wheelchair into the boot, grab the cases that remain unpacked from Friday, and Louise puts Joel into the childseat. Eve is on the doorstep in tears... I think she's now realised the severity of Joel's condition. It's heartbreaking to see her crying for Joel, worried sick about him.</p><p>We head to Birmingham Children's Hospital and I follow the signs for the A&amp;E department. It's a different entrance than the main one, but as I leave Lancaster Circus and follow the directions for the A&amp;E, there are no more signs.. where the hell is the A&amp;E entrance?? I'm then stuck in the one way system around Colmore Row.. I follow a car through the 'no access' area to come back down by the law courts and eventually back to the main entrance area where you can see the A&amp;E department.. but it's no entry to the A&amp;E.. I park on the street to drop Louise and Joel off, in a 'motorcycle only' marked bay.. it's the only space around - all the other on street bays are full, and while I've got a swipe card for the multi storey car park, it's the the other end of this long street, as far from the A&amp;E department as you can get.</p><p>Louise heads off with Joel to the A&amp;E, I leave the headlights on the car and run in to the reception of the hospital to see if I can park in the main car park for a bit until I know if they're putting Joel back on the ward... They say "Well, you can park for 10 minutes on there..." Great. Another guy says "Tell him he'll have to use the multi storey".. Thanks a lot, jobsworths. There's loads of spaces free on the main car park, but they won't let me park there.. The guy I'm talking to says "Well, it's free on the street after 6 anyway... " I thank him, and run back to the car as a traffic warden see's me approaching and asks if it's my car... "Yes, it is".. I say. He insists "You can't park there!" and starts to get his ticket machine out... I tell him that I've just dropped my boy off for the A&amp;E and was trying to find out where to I can park, and he says "Ok, that's fine".. I get back in the car and drive up the street.. there are NO on street parking spaces available.. so I head to the multi storey..</p><p>Fortunatley (relatively), there are spaces on level one.. so I only have to walk two flights of stairs with an overnight case and a holdall.. for ages. Two lifts, and about 3/4 mile of corridors. I get to the A&amp;E department and I can't see Louise and Joel anywhere.</p><p>I wait at reception and then I see through a window, one of the doctors I'd seen on Ward 10.. I ask the receptionist if that's Joel Sheldon, she confirms it.. looks at my bags and asks if I'd like to go in the room.. As I enter, I hear the doctor say that Joel is going to have to be admitted for a few days, and a scan tomorrow.</p><p>He then takes us to the Resuscitation Room.. I immediately fear the worst, but he explains that Joel will need a stitch to close the wound. He removes Joel's bandage and gauze which has been on for about 30 minutes, and it's soaking wet. He sniffs it, and tells Louise that it does smell like CSF.</p><p>I actually feel my legs turn to jelly at that point.. the bandage is soaking wet - and that's the SECOND one tonight after Louise initially became alarmed.. how much CSF was he leaking? What is the safe level?</p><p> </p><p>The doctor tells us that he'll have to stitch it.. after a bit of prodding, he confirms that it's coming from a channel near the top of the wound. He wants to use a freezing spray rather than a strong sedative for Joel.. but then they can't find any of this magic spray.. apparently only one bottle exists in the A&amp;E department, so he says that they'll have to do it without any anaesthetic.. two stitches, no anaesthetic, where he's just had major brain surgery.</p><p>Joel is very good... very patient, very calm.. calmer than me I think. The doctor gives him a 10ml syringe and asks him to try and blow into it.. as if he's blowing a balloon. I wonder if this is some kind of avoidance technique to reduce pain - but no, it's to force pressure in the head to see where the CSF is leaking from. This grosses me out completely. Joel becomes agitated, but as the doctor is threading the needle through his scalp, he hardly winces.</p><p>Then the doctor applies a pressure bandage, and wraps surgical bandages around Joel's head - tightly.. Very tightly. Then another, then another. There's four or five bandages in total (possibly even six, I lost count) around Joel's head. His ears are covered, and one eye is being forced closed because of the bandages. They're taped very strongly to secure them, and Joel is complaining that it hurts. It needs to. Pressure needs to be applied to the back of his head where the stitches are , but Joel is in agony. He didn't cry this bad when he was being sutured without the anaesthetic. About 30 minutes later, we're back on Ward 10.. Joel is still crying out... while drifting in and out of sleep...</p><p>When I eventually leave the ward at about 11.15 - I still hear Joel screaming in agony outside the ward. I pity the other people in the ward at having to spend the night with Joel crying.. then I think to myself, they've got it easy. We've got years of this to come.</p><p> </p>http://asenseoftumour.blogspot.com/2011/02/life-is-pretty-well-crap.htmlnoreply@blogger.com (Jason Sheldon)2tag:blogger.com,1999:blog-3292925915106829601.post-305915584905277586Sun, 30 Jan 2011 23:29:00 +00002012-10-05T22:16:02.470+01:00Easy like Sunday morning...<p>On Sunday morning, Joel was fine.. I had to pick Eve up from her friends house before coming back to cook Sunday lunch, but time was against me so we decided that we'd have a snack for lunch, and then a meal for tea..</p><p>Louise decided to take Joel down the road to her moms in his Ferrari Red Wheelchair... I watched from the bedroom window as they left, and cried. As Joel looked up at me and waved, his face was beaming. He seems so happy - oblivious to the gravity of the situation he's in..</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0793.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUdcoNqbYKI/AAAAAAAAAEg/Sx82cu7HAP0/IMG_0793.JPG?imgmax=800" alt="Happy boy" width="500" height="500" border="0" /></p><p> </p><p>When I arrived at Eve's friends house, her dad said "Did you get the toilet roll?". Dare I forget the toilet roll. I'd tried to FaceTime Eve before I'd set out, but as I found out, her iPod had run out of juice.. lord knows how long she must have been playing with it... but she'd had a great time making jewellery, playing the piano, playing pool... I think she'd like to live there...</p><p>When we got home, Joel and Louise were in the living room. A blanket spread out on the floor, and Joel was sat upright on the blanket with crackers &amp; cheese.. I half expected a bottle of Chianti next to him as well, but thankfully not.. He'd insisted he wanted a picnic for his lunch, so a picnic he did have.. and enjoy it he did.</p><p>He didn't have an appetite for the evening meal - I wolfed mine down.. a little too much too fast. I'd made some apricot, orange and sweetcorn stuffing - Even Eve had some of that. I had too much and sat on the sofa unable to move for a few hours after. Joel had a bath, carefully, as not to get Steve Backshall wet (the name he chose for his Hickman Line - which he thought was a great idea at the time, but now seems a little shy when people ask what he's called it.. That's the Alan Woolford effect for you!)</p><p>When the kids had gone to bed, Louise and I were stood in the kitchen. She poured her soul out to me and I felt helpless. What could I do? She said that the seed was there from the start, that nothing could have prevented this.. Joel just had a timebomb from the moment he was born.. waiting to go off. She's right, but what consolation is it? Again, we find ourselves studying the last 12 months, picking out little things that could have been a sign.. but as Joel was 5 - they were also the signs of a typical 5 year old boy. Was there something we missed? Could we have had this diagnosed sooner? I doubt it, so does Louise - but you still kick yourself for not thinking about it sooner.</p><p>The reality is of course, even if it HAD been detected sooner - it still wouldn't change the outcome.. he'd still have a brain tumour that needed removing.. he'd still need chemo and radiotherapy. There was NOTHING we could do to prevent it, and if we HAD been concerned sooner, the symptoms may have been passed off as so many other things.. we all had flu over Christmas - so that would explain his headaches.. there were stomach bugs going around school - which could have accounted for the vomiting, and as for losing his balance? Well - what 5 year old DOESN'T lose his balance?<br />The fact that his P.E. teacher, ballet tutor, and dance class teachers never noticed anything untoward gives us a sense of relief that maybe we did find it as soon as we could. It's like a big jigsaw puzzle that you only see the big picture when you fit all the little pieces into place. We couldn't have spotted it sooner than we did.</p><p>But we're still riddled with guilt. I for one feel guilty for all the times I'd shouted at Joel for messing around.. climbing stairs and bouncing off the walls, then crawling on his hands and knees.. I thought he was being ridiculously silly, yet he was probably panicking and wondering what the hell was going wrong with him that he couldn't climb the stairs properly... and walking along the school path - he'd walk all over it... never in a straight line... sometimes stumbling off the path, and I'd have a go at him for being unruly... Yet not ONCE did he turn round and say "Dad, I can't help it... I'm TRYING my hardest..".</p><p>I couldn't stop worrying about how Joel would react to losing his hair from the chemo.. it's not that he has nice hair.. he does have lovely long eyelashes though.. they're so long, and I've promised myself that when he starts losing his hair, he won't be alone.. I'm going to have mine shaved off too.. I'll probably look for sponsorship when it happens, so don't stop reading the blog just yet!</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0795.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TUddzZkH8SI/AAAAAAAAAEo/Uxz9tg_xjqw/IMG_0795.JPG?imgmax=800" alt="My beautiful boy" width="500" height="500" border="0" /></p><p>I'm not looking forward to it myself, but I don't want Joel to feel different. At least I can take solace in the fact that he's at a decent school where it's unlikely that kids will pick on him for having no hair.. that said, he's unlikely to be back at school for some time.</p><p>We did a lot of crying last night... but worse was to come.</p><p> </p>http://asenseoftumour.blogspot.com/2011/01/easy-like-sunday-morning.htmlnoreply@blogger.com (Jason Sheldon)2tag:blogger.com,1999:blog-3292925915106829601.post-4222030543548789097Sat, 29 Jan 2011 23:21:00 +00002012-10-05T22:15:54.815+01:00We gotta get out of this place..<p>Saturday morning. Usually we'd be getting the kids ready to go to Walsall College where they enjoy a dance &amp; theatre class run by Carol Harvey-Barnes. While they'd have a couple of hours there, Louise and I would have a walk around the town, usually ending up in Starbucks before going to pick them back up at 11.30.. then we'd sometimes head over to Telford for a walk around the shops there - and to see the clock with the bubble-blowing frog.</p><p>Today, we stayed in. When Joel had gone to bed last night, I'd asked him to do me a favour for the next few weeks... that he doesn't try to go up or down stairs without mommy or daddy..</p><p>For the last couple of years, he's been getting up at around 5am and making his own way down the stairs to play on the PS3 or Wii.. but now, with his balance all over the place, that worried us. He promised us he wouldn't.. I told him if he wanted to go up or down stairs, he should ask us to help him, as we'd need to be underneath him as he goes up or down.. I think he understood why and realised it's for his own safety. He stayed upstairs this morning until Louise came down. Last night, he slept in our bed - on my side. I slept on the sofa. Before I went to sleep, I looked around his room - his toys and his desk... his posters. I felt like I was grieving the loss of a child. In a way, I am.</p><p>I woke up late this morning, comparatively.. not long after, Joel's granddad Percy came to visit. I made some tea and while in the kitchen, I heard him asking Louise about some medication he was on. I think Louise was losing her patience a bit.. she's given up work for the time being. There's another knock at the door and this time it's Louise's brother, David. He didn't visit while Joel was in hospital - he couldn't. He couldn't face Joel in the hospital for fear of breaking down. I understand how he felt, so he made sure that he would visit Joel as soon as he came home. David (and his wife Carol) has been a godsend over the last two weeks, picking Eve up from school for us and giving Eve and his nan a lift to the hospital when possible. It was good to see him, and gave me chance to thank him for helping us out. He graciously said it was nothing and that we wouldn't need to ask.</p><p> </p><p>I'd agreed to let Eve sleep over at her friends house for the night.. she'd been looking forward to a sleep over for ages.. and her friends parents kindly said it was no problem. We thought it would be from Friday night to Sunday lunchtime, but with Joel coming home Friday night, Eve wanted to stay at home on Friday to greet him.. That was sweet.</p><p>I drove Eve to her friends house on the afternoon, and Eve is quiet in the back of the car again. Every set of lights where I stop, I ask if she's ok.. she's staring out of the window and when she makes eye contact with me in the mirror, I see she's welling up. "What's the matter sweetheart?" I ask her. <br />She wants to go home. She's missing Joel, and missing her mom. I ask myself if I should turn around and go home, or pull over and have a chat.. in the end, I carry on.. telling her how much fun she'll have, and how her friend is excited at the thought of them having a sleepover. When we arrive at the house and park on the driveway, I switch off the engine, undo my seatbelt and turn around to talk face to face with Eve.</p><p>"Are you ok? Do you still want to go home?"</p><p>She looks at me with tears in her eyes and nods.. I try to comfort her with words as best I can.. "You'll have a great time Eve.. and I'm only a phone call away if you want me to pick you up!". She smiles, gets her bags, and we get out of the car.. She stares in awe at the house. It's a lovely house.. very art-deco to look at from the outside.. almost like an old cinema, but very funky and modern inside. I'm offered a tea which I accept and take a seat. Eve is off already, running around the house with her school friend. She'll be fine.. I sit and chat for a while, as time flies. Louise calls.. I have a shopping list AND I'm supposed to be working tonight. "Don't forget the toilet roll!".</p><p>I'm sure we've got some, but it's a reminder that I need to hurry anyway if I'm to make the LG Arena in time.</p><p>I stop at Sainsbury's on the way home.. get all the items on the list, including toilet roll. Normally, I'm a stickler for getting the best bargain.. "12 rolls for £2.67...that's 22p per roll.. ooh, 9 rolls plus 3 free for only £2.49"... but tonight, I just pick up a packet of 4 and don't even think about comparing prices. Worrying about the value for money of toilet roll seems pointless these days.</p><p>I get home, unpack the shopping and get changed for work.. Joel is sat on the sofa playing Angry Birds.... he's managed to get to level 18 already. I'm still on level 5. Before I leave, I ask for a kiss and tell him I love him. He replies in a warbled voice "I lo-ove yo-ou to-oo-oo". I don't know why his voice is so childlike now.. I hope it's not permanent... it's slow and cumbersome, and painful to hear when you know how articulate he was before with his speech.</p><p> </p><p>My night is wasted. I'm supposed to be shooting a female X-Factor contestant's concert for a Sunday paper's lead review and there's no pass.. Normally the production teams are quite flexible and accommodating (especially when it's coverage of this size!) but tonight, they say no.. they don't even have the decency to tell me to my face - asking me to wait 15 minutes while they sort it out, then after 30 minutes and I ask the box office to chase it up, they pass a message back saying "It's a no". I'm not too bothered about not shooting her - but I am bothered at the fact that I've come out expecting to earn some money for the first time in two weeks and leave empty handed when I could have spent more valuable time at home with Joel. I let the paper know that they refused access, they have a mild panic attack as now they have to change their plans for the music section next week. <br />Part of me hope's they cut the review altogether, but that wouldn't be very fair on the reviewer. Thankfully, the picture desk say they'll pay me a decent fee for turning up so at least my journey hasn't left me out of pocket.</p><p> </p><p>I get home just before 9pm and Joel is still awake.. thank goodness. Eve has been trying to Facetime me, so I facetime her and she speaks to Joel for a bit. She wanted to facetime Joel but bless her, decided against it as she thought he would be resting in bed, and didn't bother me because she knew I'd be working.. or thought it at least.</p><p>Joel has great fun speaking to her and actually SEEING her.. We're glad they both have iPods now.. Facetime is very useful.. even if the technology has been around for years before Steve Jobs championed it as his own idea...</p><p>We say goodnight to her - she looks like she's having fun. She's happy anyway. Joel also enjoyed his first FaceTime experience. Thanks Steve.</p><p>No sooner has Eve said goodnight, Joel wants to go to bed. I carry him upstairs and he nestles his head into my neck and shoulder. Before the tumour, he'd never be so close as this. As much as I like the loving I get from him now, I'd still rather have the child back who doesn't want to get close, the child who can't sit still for more than 30 seconds, the little boy who would ignore every request for a kiss and a hug from me.. I feel like I've had my child taken away from me and substituted with another. I don't like it. I want my son back.</p><p>Tonight, I sleep in Joel's bed as he sleeps in the arms of his mother. I wish our bed were big enough for the three of us. I don't want him thinking that I'm not there for him - but I don't want to push myself on him over his mother either. I think she's more important to him than I am at this moment. He's always been closer to her than me, although lately, he's been the closest he's ever been with me.. It's like he's forgotten that he's been his mums boy.. I don't want to take that away from her, so I stay in his room tonight. Lonely.</p><p> </p><p> </p><p> </p>http://asenseoftumour.blogspot.com/2011/01/we-gotta-get-out-of-this-place.htmlnoreply@blogger.com (Jason Sheldon)2tag:blogger.com,1999:blog-3292925915106829601.post-7247703470490634439Fri, 28 Jan 2011 23:40:00 +00002012-10-05T22:15:47.953+01:00Pie & Chips & Mushy Peas... Is all my brain and body needs...<p>It's a fairly good start to the morning. I managed to sleep through until 7.15.. no rude awakening by the smoke detector.. looks like I've made a spider homeless though. It was him or me. Although I now think back to the time I hoovered up a spider as a child and my dad telling me "That was probably a mommy spider and all her children are at home wondering where she's gone...."</p><p>I've always tried to move spiders outside rather than kill them, and I make a point of telling my kids how important it is not to kill creatures 'just because they don't like them'. I'm terrified of moths, spiders, creepy crawlies of all shapes and sizes, but I'd always try to get rid of them without harming them.. I've dripped with sweat trying to catch a spider in a glass with an envelope before flicking it out the kitchen door, running in slamming the door behind me in case the wind blows it back in... Eve is terrified of spiders too, but thankfully, I know she'd not kill one. Aside from the fact that she's listened to what I said, I don't think she'd get within reach to kill one if she wanted to..</p><p> </p><p>I'm about to leave the house to take Eve to school and I remember that Joel had made cookies yesterday while I was away..</p><p>I get to the hospital this morning and Joel is happily playing 'Cat Physics' on his iPod.. He's reached level 22 in a day. It's fun, and it helps him learn about the effects of gravity, velocity, reflection etc.. he's racing through it.</p><p>The baby in the bay next door is missing.. I ask Louise what's happened to him.. "The nurse has taken him for a bath" she says. No-one has been in to see him. It's mid morning before anyone does, and as the woman approaches the bed, the baby just sits there with no emotion.. "It's mommy.. " the woman says.. "Hello &lt;name withheld for privacy&gt;, it's me, mommy". This is obviously a child who doesn't recognise his own mother. He doesn't make any attempt to reach out for her, and all through the night he's been crying out for mommy.. different nurses comfort him, and he settles with all of them. He doesn't know who his mommy is.</p><p>They're here for less than an hour before they've left again, but not before deciding what they want for lunch.. pie and chips is one of the items I heard.. with mushy peas.. Lovely. Get your priorities right love.</p><p>In the meantime, Joel has been without food since 6.30am, and has been on just liquids until 11.. Dr. Bennett comes to visit us - he's an anaesthetist normally, but today, he's the one putting the Hickman line in. He draws plenty of diagrams which aid me, and is very helpful. He tells us Dr. Underhill will be Joel's anaesthetist today and that she'll be along later.. she joins us shortly after, and talks to Joel about iPhone apps. She has an iPhone and Joel has pleasure in showing her Cat Physics.</p><p>There's a chance he could be in surgery shortly after 1pm, so we get him into his gown and ready to go... we still have NO idea if he's going to be allowed home tonight.</p><p>Colin turns up with Joel's lunch order, despite him being "Nil By Mouth" until after the op. Louise asks him to put Joel's name on it for when he gets back from surgery. Colin apologises and takes it away for later.</p><p>Shortly before noon, someone from the family of the boy next door returns to the bed side.. the reek of alcohol fills our bay, and it's not hand gel. There's no sign of the mother or father. The little boy is beautiful, and doesn't know who his family is. I go to the kitchen to make a cup of tea, and they're in there.. One guy, appears to be an uncle figure, says "There's a pub next door"... that says it all to me. Beer and chips, that's all they care about.. a child less than 2 years old is sat in the bay next to us, first time he's been awake for 3 days, with fractured skull, fractured jaw, and fractured pelvis.. and they're wondering where the nearest pub is. Scumbags don't deserve children if you ask me.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0791.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TUNhzoDrThI/AAAAAAAAAEU/dO8N9bd_rEE/IMG_0791.JPG?imgmax=800" alt="Joel is delivered to the operating theatre" width="500" height="500" border="0" /></p><p>We're called to say that Joel is about to go into surgery to have the Hickman line put in.. we're allowed to go with him to the anaesthetic room and the team are there ready to get him to sleep.. they opt for gas so as to protect his nerves. My only memory of gas is concentric circles, red and yellow, decreasing, with the theme music to Dick Barton playing.. then my nose feeling like jelly, and a gorgeous blonde dental technician waking me up. I'm sure she felt a mutual attraction to the 7 year old boy having a filling.. I've lived with that thought for 32 years. Please don't shatter it.</p><p>Dr Underhill, the anaesthetist, lets Joel play with her iPhone.. having seen him playing with his iPod touch earlier. She loads 'Talking Tom' and tells Joel how to stroke him, feed him, and make him scratch the screen.. all the while, slowly increasing the amount of 'magic wind' We all laugh, with the image of Spongebob &amp; Patrick and their magic bag of wind... Before long, he's asleep.. we kiss him, wish him luck, and leave the operating theatres.</p><p>We go for a bite to eat in the cafe downstairs... fish and chips (it is Friday after all).. I begin to feel like one of the scumbags from the bay next to us.. except I'm drinking diet coke instead of Fosters.</p><p>We head back to the ward and sit for a while by the empty bed.. I can't remember what we talked about.. If I'm honest, I think we may have sat there silent.... It wasn't long after we returned anyway, before they said he was ready and we could go down to collect him..</p><p>As we walked into the operating theatre, a nurse came from behind a curtain where there was a bit of commotion and said to our escort "Not yet". I felt horrid. "Oh dear god.. what's happened...". Horrible thoughts went through my head, and the nurse reassured us quickly by saying "No problem, he's just on the bed pan...".</p><p>Turns out he wasn't.. while coming out of the anaesthetic or during his lumbar puncture, he'd soiled his pyjamas and the bed sheets... so they were quickly trying to clean up all the mess. He was horrified, and from embarrassment, clammed up. He wouldn't talk to any of the nursing staff. As soon as they said we could go in, we squeezed his hand, kissed him, and told him everything is alright and not to be embarrassed about anything. I said to the nurse who escorted us "Been there, seen it, done it..." and she replied "Yes, I think we probably all would during an operation like this...". I pointed out that I was actually talking about when I returned from an Egyptian cruise, not an operation. I don't think she saw the funny side of it. More a sympathetic laugh for Louise.</p><p>Eventually, Joel became a little more relaxed and open, and we returned to the ward.. and there was a gathering around 'the boy next door'. We had our curtain closed halfway along their cubicle.. not sure why it was only half way.. I don't think we'd actually opened or closed it, but that's how it was..</p><p>Joel became more aware of his surroundings and said he was hungry... Louise asks for Joels dinner.. they can't find it. They have no idea where it is. Great. He's had nothing to eat since 6.30 this morning, and they can't find his lunch that we'd asked them to save for him...</p><p> </p><p>Joel still hasn't had his CT Scan either.. somebody forgot to book it. Mr. Solanki had ordered it, but someone lower down the ranks failed to action it.. we're told it's not going to be until Monday now, so Louise has to prepare for another weekend in the hospital. What a waste of resources.. just for a CT scan - we'd have to take a bed for another 48+ hours....</p><p>At 4.40, Patrick - Joel's nurse for today comes to us and offers us a deal.. if he can get us down to the Radiology department before 5pm, they can do a CT Scan now, and we can go home tonight.. It's a race against time as Patrick has to order a porter (for health and safety reasons apparently, nurses and parents can't move beds!), and Patrick has to ensure the bed has portable oxygen and a SATS monitor. The porter arrives and navigates us through the corridors, around all the abandoned trolley beds, wheelchairs, and other patients until we arrive at the lift to take us to the ground floor. The lift door opens, and it's full.. no room, so we have to wait for them to disembark at their floor before being able to call it back to ours. Tick tock.. it comes back and we continue.. we arrive at the radiology department and no-one is around.. it's 3 minutes to 5.. looks like we're staying at the hospital for the weekend.</p><p>Then a young lady walks around the corner and says "CT Scan? Is this Joel?... Can you confirm date of birth?". There's silence as I wait for Joel to respond.. then I realise she's actually talking to me. "Oh sorry - I thought"... never mind.. "er.. " I continued.. I was trying to remember the year.. I always get confused with the years.. "Twelfth of the Twelfth, Two thousand and... er... four".</p><p>Great.. Password accepted! We're ushered into a room, given heavy lead lined gowns and allowed to hold Joel's hand as he enters the biggest donut he's ever seen.. He laughs when I suggest this.. not the best idea as he's got to keep still. He's perfect - so still.. the radiologist comes out, gives Joel 3 stickers, and says the scans will be available immediately for the doctors to have a look.. and we're taken back to the ward by the porter.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0792.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TUNh1XRkcAI/AAAAAAAAAEY/2xY-analHi8/IMG_0792.JPG?imgmax=800" alt="Machine that goes Ping" width="500" height="500" border="0" /></p><p>Before too long, Joels tea arrived.. Spaghetti Bolognese... Louise starts feeding Joel and he's loving it.. his favourite. Then Maggie from the cancer ward comes to visit us and explain what's going to happen next week.. I take over feeding duty while Louise talks to Maggie. All of a sudden, the girl in the next cubicle opens the curtain fully and gawps at Joel.. unbelievable. I'm too shocked to ask Maggie if she'd mind closing the curtain again.. I carry on feeding Joel and secretly praying that social services are looking into that boy's care. I have a feeling that the nurses are too.</p><p>A few minutes later, Joel has spaghetti sauce all over his face.. there are bits of spaghetti all over the makeshift napkin in front of him, and he still has half a plate left, AND a nice looking piece of garlic bread.</p><p>Dr. English and Mr. Solanki appear and say how good Joel is looking. Dr. English tells us that he's looked at Joel's CT scan and it's looking good. Then he just says out of the blue, completely unexpected "And the CSF is clear, there's no sign of the tumour having spread". Louise puts her hand to her mouth and immediately fills up and sobs with relief. I start to cry - holding a plate half full of spaghetti bolognese.. I feel a wave of joy just hit me and knock me back.. They all quickly pull the curtains around our cubicle. I think some of the other people on the ward must think we've received tragic news, especially hearing sobs coming from being the curtain.</p><p>I look around for somehwere to put the plate down and can't see anywhere.. then I see Joel's face.. a look of bewilderment - part fright, part concern, part surprise and part happy.. he's crying too, and laughing - and smiling. Louise puts her face in front of his and says "Joel, I love you so very much, and I'm so so happy". Joel's smile reaches across his face and his eyes are glassed up.. and he doesn't know whether to snigger or cry.. I think it's pure raw emotion going through him.. I know it is with us.. there's no explanation for him to cry.. It's too soon for him to get a reaction from seeing mom and dad cry.. it's like he understood what Dr. English had said and what it meant for him too. Dr. English finally said "...And so, Joel is definitely in the standard risk group".</p><p>How could I be so happy at hearing confirmation that my son has cancer? Of course, I'm not happy - but I'm over the moon that it's standard risk, and not aggressive. It means an 80% chance 5 year survival compared to only 60% for aggressive risk. But that's still not 100%, so while I'm ecstatic, I'm still apprehensive - but so far, this is on par with Mr. Solanki telling us the resection of the tumour last week was a success..</p><p>The family next door all seem to be getting ready to go. They have their coats on... Looks like no-one is staying again. The father goes over to the nurses station and says that he's going, and the nurse gives him a filthy look, full of contempt. They're just dumping this child on the ward for the staff to look after. It's not fair on the child, the nurses, OR the other patients on the ward who can't have the full benefit of the staff because they're having to change nappies and basically babysit!</p><p>They all leave, and it's less than 90 minutes before the mother and father return, with their tails between their legs. We think they've been called back to the ward to look after their child. These are the ONLY parents on the ward who are not staying. Mind you, it's Friday, and the bar around the corner probably has a 2-4-1 promotion on bottled beers tonight.</p><p>It's 9pm before we're finally discharged from the ward.. we're back on Monday to meet Dr. Ford and Dr. English for the plan of Joel's Chemo and Radiotherapy (and more physio!), but for now, we're clearing out our food cupboard, filling the car, and coming home.</p><p>I make a couple of journey's to the car to take bags of clothes, food, gifts etc. The special parking permit allows us to park in the staff car park which is a distance away (not <em>too</em> far), but at least it's all undercover and avoids having to walk around the dark streets. The only problem is that it's multi-storey, and they've decommissioned the lift.. it doesn't work, it's dead.. lifeless.. so it's all narrow flights of concrete stairs...</p><p>I'd moved the car earlier from the 4th floor down to the 1st floor, but it still meant that I had to wheel Joel in his wheel chair up the exit ramp of the car park and up another 'down' ramp to get to my car because the lift had been taken out of service.. I'm not being funny, but giving 'long stay parents' a parking pass with no disabled access has to be one of the most short sighted decisions ever, surely??</p><p>We get home, the door opens. Joyce helps us carry everything into the house. Eve awakes from the sofa to find Joel sitting opposite her on the other sofa. Her face is a picture. She almost breaks down in tears when she see's Joel.. he just gives a casual grin and chuckle, smiles at her, and twists his fringe around his finger.. what he can reach through the bandage anyway.</p><p>Eve is too nervous to give him a big tight squeeze, but gives him a kiss... I ask her if she enjoyed the cookies Joel had made for her, and ever so genuinely she said "Oh yes, I did - they were absolutely gorgeous!!" - proper grown up. I don't want them to grow up at times like this. I don't want them to have to experience the pain of real life.. but then again - you can't have the immense pleasure children can bring you without having some pain to go with it.. for every action there has to be a reaction and all that.</p><p>That said - Today has been a good day. One of the best in the last two weeks. He's home now.. two major hurdles overcome. We're looking good. I can't stop thinking about the boy from the next cubicle.</p>http://asenseoftumour.blogspot.com/2011/01/it-all-about-stragglers.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-2913430295119195557Thu, 27 Jan 2011 23:59:00 +00002012-10-05T22:15:39.762+01:00Dog Day Afternoon....<p>Thursday... No pictures from today. Had so much to do - This morning, I had to take the dog to the vet for his injection... Joel is booked in for an eye test with the opthamologist, and I'm taking the dog to the vet..... I'm waiting in the reception area of the Vet's practice and staring at the receptionist. Not in a lecherous way.. but thinking to myself, I know that face.. and the voice. Then it dawns on me - she worked for me when I was at US Gold about 15 years or so ago. She didn't recognise me... we passed pleasantries and I was called in to the vet. I'm sure I had to make her redundant, which was a shame.. she was a good and dedicated worker...</p><p>The dog has his second vaccination and I ask the vet if his weight is ok, and explain that I've not been there for a fortnight while being in hospital with Joel so not sure if the mother-in-law and daughter have been overfeeding him... he seems to have ballooned in 2 weeks.. 1 kilo extra! He needs a bit of dust I think. The vet says it's fine, and that he's a puppy - overfeed a puppy and all you'll get is a pile of sick he says. Frank, but true.</p><p>I go home and return the dog to his basket.. giving him a love and a fuss.. then realising I stink of stale dog wee... Remembering I'm off to see Joel now, I decide to shower and change my clothes, but first I hoover that damned smoke alarm. It went off again this morning.. 3 mornings on the trot, all about the same time - between 5am and 6am.. I can't bear any more.. so I hoover the sensors, just in case it's a bit of stray dust or Harry the spider waking up for work. Not sure if it will work... it's mains operated, so it's not like it's a dying battery.</p><p> </p><p>I get to hospital and the car park is full, so I park on the open air one. It still won't accept £10 in one go.. so I put £8 in and leave my note on the car dashboard again.. "Machine Not accepting £10 for 24hr ticket - Joel Sheldon, Ward 10" If I get clamped and they haven't tried at least to get in touch, I'll go spare.</p><p>It's probably good parking on the open air one today, because at least I can go and pick Eve up from school, bring her back, and use the same ticket, providing there is space on the car park...</p><p>My good idea is shattered when I reach Joel's bed and one of the nurses says "Has anyone told you about parking?".. "er.. what about it??". There's a parking pass waiting for me at customer service. £5 deposit and then £10 per week for parking instead of £10 per day. Great. I've just spent £8 on parking when there's a pass for me. Last night, we were also told that there's a good chance Joel may (<strong><em>MAY<span style="font-weight: normal;">) <span style="font-style: normal;">be able to come home Friday night, after his Hickman line has been inserted, but we're not sure.. He's having a Hickman Line in his chest, lumbar puncture, and CT Scan.. but the irony of the whole parking thing is just hilarious... </span></span></em></strong></p><p><strong><em><span style="font-weight: normal;"><span style="font-style: normal;">We've been here the best part of two weeks.. at £10 per day for parking. They give us a 7 day parking permit for £10 (plus £5 deposit) <strong>the day before he might come home!</strong></span></span></em></strong></p><p><em><span style="font-style: normal;">I'm asked to sign a form for the parking permit. It's a 7 day pass, and if you don't renew or return the pass by the 7th day, you lose your £5 deposit. You need the pass to get in AND OUT of the car park.. so I wonder how you get the £5 deposit back by returning the pass, and yet still be able to get out of the car park on the evening? I guess I'll find out next Thursday.</span></em></p><p><em><span style="font-style: normal;">I also wonder if we'll be able to extend it if Joel is discharged as an in-patient. We have LOTS of appointments coming up at the hospital on an out-patient basis.. for chemo (possible 8 x 6 week courses!), physio, eye tests and general follow ups etc. so we'll still be needing to park the car... We shall see.</span></em></p><p> </p><p>Joel also has a new toy.. a Ferrari Red Wheel Chair! In Physio this morning while I wasn't there, he was whizzing around the gym doing turns on the spot, and really took to the chair like a duck to water. This will be his chair for the next few months now. He loves it. It's a shame we can't decorate it or personalise it, but it's not our property - it's on loan to us so has to be returned in the same condition. Sadly, it's not big or strong enough to take my weight.. I was tempted to try popping a few wheelies up the corridor.. Maybe if he grows a bit due to the steroids, then he'll need a bigger chair that will fit me too...</p><p>This also means we'll get a blue badge for the car, carers allowance, and all this other stuff that's gone over our heads.. we don't feel like we're justified having it - but apparently we're entitled to it all.</p><p>The blue badge will come in handy though with the chair, as Joel is getting tired REALLY quickly.. I'm hoping he'll be able to stay awake for the Birmingham City vs Manchester City match next week when he's mascot. They may have to drag him from the dressing room, heel's scraping and bleeding along the floor of the tunnel as he's pulled unconscious to the centre circle... Tens of thousands of fans, Satellite TV viewers, and he's snoring on live TV... He'll be fine I'm sure.</p><p>I leave to pick Eve up from school, and call Joyce to let her know that I'm picking her up. I ask if she'd like to come.. I'm possibly shooting Usher later at the NIA, but that's not confirmed yet.. I could really do with getting back into work mode.. I can't afford to let my clients go without pics for much longer... so I've got all my cameras packed in the car. Joyce says that she'd like to come, so I have to pick her up from home after I've picked Eve up. Then she drops the bombshell.. "Marion wants to come as well.. she's invited herself". I don't mind, but as long as I'm not expected to give them a lift back.. I'm working 2 minutes away (if it comes through) and intend to go there, do the job, then get back to Joel's bedside.. I'll pay for their taxi if necessary, but I haven't seen Joel much today..</p><p>On the way to the hospital, I'm quiet. I'm thinking so many things in a world of my own.. we get to the hospital and park up. Marion turns to Joyce and while looking at me says "Looks like we've been sent to Coventry haven't we?". This angers me greatly. I've got things going through my head and she's having a sly dig at me for not talking in the car. I had nothing to say, and didn't want to make any conversation. My concentration on my driving wasn't as sharp as it should be anyway.. the last thing I needed was further distraction. I'm in a bad mood now. I've been gracious enough to give her a lift, and now she's trying to provoke me. I have no time for it.</p><p>My uncle John is already at Joel's bedside when we arrive. Conscious of the '2 visitors per bed' rule, I ask John if he'd like a cup of tea, and we go to the kitchen for a bit to allow Joyce and Marion to sit with Joel. It also means I don't have to sit there and have Marion riling me thinking that she's cheering me up.</p><p>The parents kitchen is crowded. There's a family of 4 eating a chip supper.. one person perched on a bar stool under my cupboard from which I need to retrieve a tea bag and the jar of honey.. fully aware that I booby trapped the cupboard when I last locked it (ok, not so much booby trapped, but hastily put everything back precariously balanced against the door), I ask the lady if she could excuse me just while I get some stuff out.. "Yeah, fine" she mutters.. and doesn't move. I raise my arm to put the key in the lock which is above eye level, and she still doesn't budge. "Excuse me please".. and I open the door. She shifts slightly, so gets a face full of my armpit and a bag of milky bar buttons in her chicken pie. I doubt she'd notice she was chewing a plastic bag to be honest... they've got chip wrappers strewn all over the place. I make a cup of tea for me and John and we go and sit in the corridor where it's peaceful.</p><p> </p><p>It turns out this family is from the child who has just been brought up to the bed next to Joel. He's 22 months old and was run over. He's been in ITU for 3 days and has just come round. His visitors (and his mother) are in the parents room stuffing their faces (well, we all have to eat), but the child is left alone save for a student nurse comforting him. He's battered and bruised, head swollen and cut, with abrasions all over the side of his face. His eyes look like he's done ten rounds with Mike Tyson.</p><p>I hope they choke on their chips.</p><p>22 months old, and run over. How does that happen? Where were the parents? Many scenarios run through ones mind.. I frequently see parents pushing prams and pushchairs while about to cross the road, they'll have their feet on the kerb and the pushchair IN the road.. with baby's face inches from speeding traffic. Sometimes I'm tempted to blare my horn as I go past.. I don't, for fear of frightening the child, but these parents need sense drilled into them somehow.. better the blast of a horn than the side of a bus.. and I know that feeling from experience!</p><p>Perhaps they were sitting having a drink at a pub and not watching the child as it played on the car park, or straying into the road? I suppose it's unfair of me to come to my own conclusions, but the fact that by 7pm the whole family has gone and the child is left on his own with no-one there except the nurses. He cries out most of the night, "Momma...". Different nurses go up and console him, and he's not wary of ANY of them.. he shows NO fear of strangers. A sign that he's used to being passed around. The child has just come out of ITU and the parents spend a couple of hours with him before leaving.. no one staying with him overnight. Welcome to the NHS, your friendly babysitting service.</p><p>7.30 comes and it's home time... It's suggested that I take the family home. I don't want to.. I'd rather pay for a taxi than waste an hour driving home and back.. but in the end, I decide I'd rather get Eve back home quickly so I agree to give them all a lift. Eve is very good tonight, no tears. Joel asks for Eve.. she approaches his bedside, and he leans over and gives her such a loving hug and kiss, and pats her back..</p><p>For all their bickering, this is a beautiful scene.. a bond I've never known.. I have no brothers or sisters to compare the feeling with, but I feel a sense of pride, and love for these two children who clearly love each other - despite their occasional differences and disagreements.</p><p>Joel decides he'll come to the door to see us out and jumps into his wheelchair.. he carefully drives up the ward to the door, only stopping for a breather near the end, at which point Louise takes over.. I ask if he likes his chair.. "Yes!" comes the prompt response...</p><p>We leave and make the journey home.. I return to the hospital about 40 minutes later.. not a bad journey really. I ask Louise if anyone has been back to see the little boy next door, who is sat there being comforted by a nurse. Nursing staff are very disciplined when it comes to discretion, but you can see from their manner that they're disgusted with the parental 'treatment' this child receives. The family have left for the night early.. probably so they don't miss Happy Hour.</p><p>As Joel goes to sleep, Louise and I sit there contemplating. Louise gets quite upset and worried about tomorrow.. Joel has his op to put the Hickman line in, as well as the lumbar puncture to see if the cancer has spread, and a CT scan. We both get worried and talk about the statistics. We still don't know for sure if it's aggressive or standard - so not sure about that 80% or 60% five year survival rate..</p><p>I tell Louise it makes no difference to me if it's 60%, 80%, or 95% - it's that percentage that DON'T make it past five years that frightens me. Doesn't matter how good the odds are, there's still a chance. It's a lottery in reverse. I still fear Joel being in the 20% or 40% of the unlucky ones.</p><p>We have to be patient, and strong.. but we're fearful. It's horrible, watching our beautiful little boy lying there so peacefully, thinking of all the dreams and aspirations WE hold for him, let alone his own, and wondering if there'll be any long term problems yet to come as a result of the treatment or the cancer itself - or even if he'll grow up into a young man. We MUST stay positive, but I'm finding it impossible to do. Our lives have been shattered.</p><p>When we had Eve and decided to have another child, we were blessed with a boy.. Our family was complete - one of each.. the perfect combination and an ideal age gap between them.. close enough together that they can play with each other as they grow up and not be too far apart as teenagers.. siblings, and best friends...</p><p>We never expected cancer would try and destroy that perfection.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0779.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TULYzyS1utI/AAAAAAAAAEM/F8lT4XAw9ow/IMG_0779.JPG?imgmax=800" alt="IMG_0779.JPG" width="500" height="500" border="0" /></p><p> </p>http://asenseoftumour.blogspot.com/2011/01/dog-day-afternoon.htmlnoreply@blogger.com (Jason Sheldon)1tag:blogger.com,1999:blog-3292925915106829601.post-6985140136099646200Wed, 26 Jan 2011 22:16:00 +00002012-10-05T22:15:32.319+01:00Sorry seems to be the hardest word...<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0761.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TUK8KvGFl1I/AAAAAAAAADo/p-WZCKdZC_Q/IMG_0761.JPG?imgmax=800" alt="Cuddles" width="500" height="500" border="0" /></p><p>I hardly slept a wink that night as it was, but at 5am - all three smoke alarms in the house started blaring, waking us with a start. Eve quivered under the bedsheets fearing she was going to burn to death. I grabbed a coat hanger (useful in the event of a fire apparently) and rushed onto the landing, jumping like a buffoon with the coat hanger trying to hit the 'hush' button on the alarm. It wouldn't stop it. I ran downstairs, no smell of smoke anywhere.. I quickly checked all the downstairs room, no sign of smoke or fire, so grabbed the mop from under the stairs.. everything tumbled out into the hallway... I'm now in my underpants.. nothing else, except for a mop. Dancing like a dervish in the hallway trying to stop the smoke alarm from ringing. Joyce is on the landing. She doesn't hang around to watch... Can't blame her. It's not the prettiest sight.</p><p>I go back to bed.. Eve asks what the time is.. 5am I say (It's now getting on for 5.15). 5.30am, it happens again.. and 5.45am. I wonder if Joyce is having a crafty cigarette in Eve's bedroom?</p><p> </p><p>I get to the hospital and walk in the room. Little man smiles as if nothing happened. Louise looks at me and says "I'm sorry for last night". I tell her I'm sorry too. We both know that it's stress and wasn't intentional. All is forgotten. I make her a cup of coffee and myself a cup of tea. I get back to the room and I see Mr. Draper, Joel's headmaster sat in the room. He said he'd visit, and Joel was really looking forward to it (I'd have dreaded it when I was his age if I knew my head teacher was visiting me...). Mr Draper had brought some presents from the staff.. all lovingly wrapped in purple foil wrap. Joel thought he had a huge bar of Cadbury Dairy Milk to open.</p><p>The first present was a book.. a very special book.. Mr Draper has obviously been paying attention to every little thing I've said about Joel, which I'm so grateful for.. It was a special edition "Beast Quest" book, with a lenticular image cover.. (often incorrectly described as 3D - it's more animation than 3D.. but that's by the by). Joel's eyes were wide open.. he LOVES Beast Quest, and this was a special book he didn't have.</p><p>The next present was a good one too... Mr. Draper wasn't sure if he'd like this one, but when he unwrapped it carefully to reveal an Official England Football Team book, it was clear he did like it - very much...</p><p>"And I've saved the biggest til last" Mr Draper said.... and handed Joel a big purple box.. "Can you guess what this is Joel?" he asked. Joel shook it gently, hesitated, and looked at his mommy... "Ooh, does it sound 'broken'?" she said, excitedly...</p><p>"LEGO!!!!" Joel squealed... and we all sat with baited breath, dreading to see that he'd already got it.. Thankfully, as Joel peeled it from the wrapping, his face beamed and we knew he hadn't got this.. a lovely articulated lorry.... Mr Draper told Joel that he'd heard about how much he liked Lego, and that he thought it was a good present to also help improve his fine motor control... Louise and I were both moved at not just the generosity, but the thought behind each present. It really lifted our spirits.</p><p>Then Mr. Draper says he has one more thing.. it's a joke book. Unwrapped, tatty, and dog eared - obviously a well read and well loved book... He says "I've kept this book on my desk for a few years now Joel, and whenever I'm feeling sad or grumpy, I have a read of this to cheer me up". Such a sweet gift. And plenty of new material for dad too..... Bonus.</p><p>Rebecca the physio pops her head around the door (they're very supple these physios) and asks if it's ok for Joel to do some physio in about 10 or 15 minutes. Mr. Draper introduces himself and says he needs to be going around then anyway, but he stays and chats a bit longer. I think Mr. Draper is very surprised at how well Joel appears, considering it's just over a week since he had the tumour removed from his brain. This reminds us that Mr. Solanki, Joel's surgeon, had kindly arranged for copies of the 'before and after' MRI scans. Mr. Draper is visibly shocked when he sees the size of the tumour and it's location in the cerebellum.</p><p>After a short while, Mr. Draper leaves us with warm wishes and love from the whole school. It's very sincere and again, most humbling. Then it's time for Joel's physio. I'm hoping I'm not in goal again today.</p><p>This time, it's Hollie who comes to collect us for Physio... She's just as happy and cheerful as Rebecca. I don't think I could work with poorly kids all day and remain as happy as these physiotherapists do.. they must either be on some serious drugs, or be angels.</p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0762.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUK8Nn9qqtI/AAAAAAAAADs/i03qJmfBAGo/IMG_0762.JPG?imgmax=800" alt="Where's the twister mat?" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>Joel pretending to be a cat...</em></p><p>First of all, Joel has to do some stretching and balancing exercises again.. getting into the position of a cat about to pounce, he has to lean forward and to the side to reach a ball, then hold that position for a few seconds... with feet on the ground.. then same again with one leg in the air. He gets bored of it quite quickly - and also very tired. Hollie then suggests catch. "Who would you like to play catch with Joel? Mummy or Daddy?"</p><p>I do that 'take a step back to volunteer Louise' thing as Joel says "Daddy!!". Great. As if my goalkeeping skills weren't bad enough, now I have to throw and catch. I go to kneel on the hard wooden floor and my right kneecap pops again.. it's painful.. I wince, then I remember what Joel is going through. Hollie offers me a chair and I graciously accept it, slightly embarrassed at my pathetically low pain threshold.</p><p>Joel has to kneel on the mat, upright... so his legs are on the floor, but his bum is off his legs.. then I throw the ball to his cupped hands. He catches a few, misses a couple.. he has to throw the ball back to me with left hand, and right hand..</p><p>His first two attempts with his left hand go behind him.. clearly there's some signalling issues going on.. but then miraculously, his third attempt is a perfect throw, straight to me... and the fourth.. then a couple go a bit awry, but on the whole, this is amazing progress from previous throwing attempts.. I'm pleased as punch. His left handed throws were better than some of my right handed throws!</p><p>Then we move onto hoopla! Throwing rings over cones.. Hollie lays out three small cones and gives Joel a handful of rubber rings. They remind me of dog toys.. but less bite marks on them.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0764.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TUK8QbeuH2I/AAAAAAAAADw/p8EmQN2oyE4/IMG_0764.JPG?imgmax=800" alt="Roll up.. roll up" width="500" height="500" border="0" /></p><p>He fails to get any hoops over the cones.. most of them seem to go far off to the right.. Hollie and I scoop them up and he tries again. He swings a hoop around so hard, and his arm smacks Hollie right in the throat. She laughs.. thinking back to my earlier comment.. I reckon it must therefore be drugs. I jest of course, but she takes it very calmly and carries on making light of it.. it looked painful though.</p><p>Again, we score nothing.. so Hollie gets a few more cones out and says "Shall we try again Joel?" I joke with Joel as I'm helping space them out... "Shall we see if Hollie can get any hoops over the cones?"</p><p>Joel comes very close to getting one on.. but the object of course is ultimately not to score.. but to get the co-ordination back... so as we go on, his aim gets better, and therefore, that's a win for Joel.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0767.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TUK8Sm0kSUI/AAAAAAAAAD0/SUEPbw47u44/IMG_0767.JPG?imgmax=800" alt="Getting closer!" width="500" height="500" border="0" /></p><p>Hollie has to go to a pre-arranged meeting, so Rebecca takes over. Joel is given the choice.. Basketball dribbling, scooters, or pilates ball... (well, 'big bouncy ball'). Joel says he likes the scooters, so Rebecca offers the scooters on a regular basis, providing that he does all the hard work exercises first... Joel agrees, like a true gent. He'd do anything for a pretty face.</p><p>Rebecca arranges cones from one end of the gym hall to the other, and gets Joel to race along by pulling with his feet.. he LOVES this.. today he's started using both legs alternately, rather than in unison.. there's still signs of the weakness on the left as he starts to drift over, but he soon reaches the cone...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0768.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TUK8VA0u6jI/AAAAAAAAAD4/V_72B92DyMw/IMG_0768.JPG?imgmax=800" alt="Look ma.. No hands!" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>Look Ma - No hands!</em></p><p style="text-align: center;"><em><br /></em></p><p>Then he has to lie prone and pull himself along by his hands.. he likes this too.. it should come in handy when he becomes a vet and is paddling out to sea on his surfboard to give dental checks to the sharks...</p><p>Rebecca decides to race him and she gets on the bigger scooter. Why doesn't Joel choose me to join in THIS exercise?? It looks great fun... I can't afford a segway.. these scooters might be the next best thing. I could probably build one with an old MFI drawer cabinet and some casters from B&amp;Q.. in fact, there's an idea to save the NHS thousands! I bet these cost a bomb...</p><p>Rebecca goes easy on Joel. He wins.. by a narrow margin...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0775.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUK8XKM4IDI/AAAAAAAAAD8/ggNVjHECdZM/IMG_0775.JPG?imgmax=800" alt="I'm on top of the world!" width="500" height="500" border="0" /></p><p> </p><p>Eventually, physio session is over and we go back to the ward. I nearly wrote hotel room then.. we should be so lucky. Joel is tired, tugging his hair again... He's got to be careful when he starts his chemo, because if he's not, he'll be pulling big clumps of it out. Nearer the time, if Joel does start to lose his hair, I'm considering having my head shaved to raise money for the Neurosurgical ward. However, rather than donate any money to them for it to be swallowed up by admin and to be directed to other 'needy' departments - I'm going to ask them for a list of items they desperately need and will try and buy the items for them directly. One of Louise's work colleagues does this as she raises thousands for the hospital who look after he son suffering with Cystic Fibrosis, and she was disappointed to see the money not going to as good a use as it could be.. so she started buying them what they needed without it getting misdirected.</p><p>It's not a prospect I'm looking forward to.. I've NEVER had my head shaved in my life.. closest haircut I've ever had is a grade 2 - but when you consider they don't even have enough mugs in the kitchen for parents to make tea and coffee with - before you even think about the MEDICAL equipment.. it's simple stuff like that to make the parents' stay more comfortable at a time when their lives are already at a low.</p><p>Despite being tired - Joel wants to do the Lego that Mr. Draper brought in.. we try to get him to have a nap, but no, Lego. Lego. He wants his Lego. LEGO!!!!!!!</p><p>We set up his table, pop him in front of it and open bags one and two... peace at last.. for all of 3 or 4 minutes. The pieces are tricky.. he's tired and losing his patience. He builds half of the cab before dismantling it, not satisfied with his progress on the current step. Frustration sets in, and pieces of lego go across the room. I pick them up and tell him it's ok to take his time, that it's not a race.</p><p>He carries on.. I know he's not going to sleep tonight, until this model is complete.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0778.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUK8Y4EB6TI/AAAAAAAAAEA/ZgaViSmxCGs/IMG_0778.JPG?imgmax=800" alt="IMG_0778.JPG" width="500" height="500" border="0" /></p><p>Later that afternoon, a nurse enters the room and asks if we'd mind going back on the ward rather than the private room - they have a patient coming in who needs to be in isolation. We have no objection - we're surprised we had that room at all to be honest, although it is with a little in-trepidation that we run the gauntlet of parents who weren't offered that room over us...</p><p>We're further down the ward.. right opposite the snorer's bed.. a Somalian immigrant family who's uncle is supervising the poorly child. He must have been cast out of the house and told to look after his nephew, just so the rest of his family could rest.. apparently, he'd kept the ward awake for three nights with his loud snoring. Even the nurses were giving swift kicks and nudges to the bed, but the snoring continued... louder.</p><p>Thankfully, we are told that the child was discharged that morning.. Cool. Now just the question with what to do with all the presents, books, DVD's, colouring stuff, washing, food, cards etc. that make up our house at the moment.</p><p> </p><p>I make a few journey's to the car to fill it up with stuff from the room that Joel either won't need, or won't want over the next couple of days. Dr. English comes along to talk to us and he's hopeful that if everything goes well with Joel's operation on Friday, Joel may be able to return home with us! At least until Monday when we have an out-patient clinic with Mr. Ford. I forget what his title is.. If I'm honest, I'm worried about Joel coming home so early, but in the same breath, I'm not keen on him staying on that ward.. there are a large number of children on the ward with brain infecions.. We fear that he may pick up a bug that will jeopardise his recoer.</p><p> </p><p>We settle in quickly to bay 8, and Joel continues his model.. it's very nearly finished, but again he loses his patience and drops some on the floor. It breaks, and a piece goes under the curtain of the cubicle next to us. Well, it's an ice breaker isn't it.. Reaching your arm under the curtain is the hospital equivalent of new neighbours nipping next door to ask for a cup of sugar, or asking a stranger in the trap next to you if they have some spare loo roll.</p><p>I manage to retrieve the stray piece of lego with some dignity.. I don't think I caught the attention of anyone in the actual bay next door... but the nurses gathered around the nurses station gave me a quizzical look. I struggled back to my feet and held up the piece of lego like a trophy...</p><p>We manage to piece it back together and Joel finishes it off.. I'm thinking of asking if the nurses have any superglue.. these models are great, but so fragile.. I picture us leaving hospital (whenever that will be) and taking all these models intact.. getting home to find a carrier bag full of lego bricks from several different models.... "I don't rememer an Imperial Articulated Death Truck in Episode IV"</p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0788.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TUK8bLIe-9I/AAAAAAAAAEE/KGXIOnFIfcY/IMG_0788.JPG?imgmax=800" alt="We got ourselves a convoy..." width="500" height="500" border="0" /></p><p>After he'd finished the Lego truck, we popped it on the side next to his bed. I wonder if you can get a Lego "Plymouth Valiant" like the one driven by Denis Weaver in the film "Duel"... Probably best you can't.. I don't want this truck going over the edge of the bedside unit and smashing into a million pieces. Well, 278 pieces to be exact.</p><p>Joel can relax now.. he's happy, he's completed it. He would not give up until he'd finished it... That's a good sign. He drifts off to sleep and looks fantastic... so peaceful.</p><p>I kiss Louise, and kiss little man and leave them to sleep, perchance to dream.</p><p> </p>http://asenseoftumour.blogspot.com/2011/01/sorry-seems-to-be-hardest-word.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-3037969994247270911Tue, 25 Jan 2011 23:07:00 +00002012-10-05T22:15:25.293+01:00Spaghetti Bolognese or bust...<p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0750.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUIIvvr6MvI/AAAAAAAAADU/Y4XPMwBq0CE/IMG_0750.JPG?imgmax=800" alt="Steelhouse Lane Police Station" width="500" height="500" border="0" /><em>Steelhouse Lane Police Station<br />viewed from the 2nd floor of Birmingham Childrens Hospital</em></p><p style="text-align: center;"><em><br /></em></p><p>Tuesday was awful. On arrival at the hospital this morning, the day was grey.. but the sun was trying to burst, or rather claw, it's way through the clouds above Steelhouse Lane Police Station opposite the hospital. It's a beautiful building.. well, looks beautiful on the outside, I wouldn't like to spend a night there.... As I came out of the lift the view above caught my eye so I took a quick snapshot.</p><p>As I write this a couple of days later, I realise the symbolic relation between the building in the photo and us, imprisoned in the hospital ward / isolation room in the hospital opposite. <br />Eleven days - no trial, no jury, just a sentence. Possible chance of parole if the chemo and radiotherapy works out.. Joel can't escape, not yet at least.. so his boredom and frustration escalates. The fine motor control issue is causing tension and he throws things across the room at the slightest hint of difficulty. We don't shout at him for that - we can't begin to understand how frustrating and confusing that is, to suddenly not be able to do something you've been used to for years... but with this comes the strops - the tantrums, and the punches.</p><p> </p><p>The day started off ok - Louise did some of the physio exercises we need to do with Joel every day - just simple stuff like balancing on one leg for 10 seconds, then the other leg, and high fives but making him reach up so he counterbalances his legs while sat on the edge of a chair or bed... then Rebecca comes and collects Joel for the REAL physio session...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0751.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUII0ukmGvI/AAAAAAAAADg/mdPgKj2tqsI/IMG_0751.JPG?imgmax=800" alt="10 seconds - Well done Joel!" width="500" height="500" border="0" /></p><p> </p><p>As we go to the gym, we walk the 'airport' link corridor again and Rebecca asks Joel if he thinks he's getting on an aeroplane.. Louise asks him where he'd like to fly to. We all giggled discreetly at the response.. having no idea where it came from... "Afghanistan" he said, matter of fact.</p><p>Rebecca asked if Joel wanted to be a soldier... he probably wants to be a war correspondent rather than a soldier, but he gave no feasible reason. Just "I like Afghanistan". I think we must watch too much BBC News 24.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0776.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TUIIxfvT_LI/AAAAAAAAADY/RcnCFh5807Q/IMG_0776.JPG?imgmax=800" alt="Come fly with me" width="500" height="500" border="0" /></p><p> </p><p>This tires him out again, but instead of giving in and having some sleep, he fights it. He refuses to go to sleep. This is going to be bad news later.</p><p> </p><p>Patrick comes in to check Joel's obs.. I'd been explaining to Joel earlier about the torch test in his eyes, and what they're checking for.. "The little black dot in your eye, that's called a pupil... and when it's really sunny or bright, it closes up so as not to let too much light in..."... blah blah, you know the rest.. Well, Patrick had his torch ready and Joel was eager to have his eyes checked again.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0752.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TUIIzPUhB0I/AAAAAAAAADc/zVgf156vXgk/IMG_0752.JPG?imgmax=800" alt="IMG_0752.JPG" width="500" height="500" border="0" /></p><p>Come tea time, the proverbial hits the fan. Dinner is taking a very long time.. We see parents walking back and forth with plates of food, and wondering why they're getting up for it themselves rather than being 'waited on' as we expect.. (Not that we expect to be waited on, but that's the protocol - food is meant to be dished out at the trolley cart and taken to each patient in turn...</p><p>Colin comes in to us and apologises immediately. "I could tell you a white lie" he starts... "But I won't.. I've made a mistake which I'll own up to.. I gave Joel's spaghetti bolognese to someone else". That's it. Joel was looking forward to his spag bol, and nothing else is going to suffice.. nothing. Absolutely nothing.</p><p>It seems parents are getting impatient at having to wait to be served their dinner that they're taking to queuing up as soon as the food trolley appears at the top of the corridor. Then they either change their mind about what they ordered, or ask for extras so they can have a free bite to eat as well.. (I've seen one parent ask for some fish fingers then stand there chatting to the guy while she EATS them in front of him!)</p><p> </p><p>We take Joel to the food trolley and tell him he can choose whatever he wants.. there's fish fingers, beans, chips, wedges, cottage pie, lasagne, veggie burger, chicken, rice, lots of things.. Joel wants none of it and is just stropping, raising his voice and being intolerable. A queue starts behind us.. it seems like we've joined the 'queue brigade' and are now holding up other people who can't wait to be served.. I start to get impatient as Joel is being very uncooperative.... "What about this lasagne? That's like Spaghetti Bolognese" I say.. Louise snaps at me.. "He doesn't like Lasagne".</p><p>This is not true. He eats it at home. I've seen him eat it. He likes it. Sometimes he says he doesn't like it. Sometimes he says he doesn't like me. Sometimes he says he hates Louise. Not everything he says is true, all of the time.</p><p>I go back to the room, it seems my input isn't helping. Louise tells Colin to put fish finger chips and beans on a plate, then we go back to the room. Joel refuses to eat it. It goes cold. The atmosphere in the room is even colder. I go and warm the food up after about 15 minutes, Joel throws another tantrum, gets out of bed, and goes and stands in the corridor blocking the way, facing the wall. We play the silent treatment, thinking he'll get bored.</p><p>I'd have played it longer had it not been for the fact that he was likely to lose his balance and fall over at any moment, or cause an accident by blocking the corridor. I go and try to reason with him, not giving in. I tell him, "Look Joel, it's ok if you want to strop, we're here all night anyway, so you can stand against the wall as long as you like.. but it isn't going to get you spaghetti bolognese so you're only wasting your own time.. but, if you want to carry on standing against the wall, let me move you round to this one so you won't cause an accident.. ", and I pick him up and move him around the corner out of harms way.</p><p>Then he sits on the floor, head facing forward leaning against the wall. I realise he's still in a precarious place if someone comes around the corner and doesn't look where they're going.</p><p>Louise goes out to get him and bring him back - this doesn't help his strop, but eventually, after about 40 minutes of shouting and concerned looks from parents and nurses alike, he starts to eat the fish finger, chips and beans.</p><p>Then he settles back to watch a film on Louise's MacBook while Louise gets in the shower. When Louise emerges, Joel proclaims "You promised me I could play angry birds when I ate my tea....". I made no such promise.. Louise however did.. and I reminded him that he was in the middle of watching a film, but if mommy agreed that, then mommy would sort it out as soon as she could. Louise loaded Angry Birds and he started to play. I made a cup of tea and sat in the armchair..</p><p>I won't go into too many details, but the pressure of the day go so much and something had to give. Louise and I had an argument, about something so trivial as the camp bed. I kissed Joel goodnight, and left, angry.</p><p>I sat in the car for nearly an hour, feeling guilty for leaving, feeling angry at Louise for flaring up, and feeling even more angry at myself for not realising this was not Louise and I arguing, but succumbing to the tension that had been building up over the 11 days, especially today with the tantrumes, and having the sense to see it, and say "Look, lets stop, take a step backward and calm down"</p><p>At least next time, I'll have something to think about and hopefully be able to stop it blowing out of all proportion.</p><p> </p><p>I don't sleep well Tuesday night. I don't imagine Louise did either.</p><p> </p>http://asenseoftumour.blogspot.com/2011/01/spaghetti-bolognese-or-bust.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-6822303772623151483Mon, 24 Jan 2011 22:45:00 +00002012-10-05T22:15:16.795+01:00Let's get physical... physical<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0722.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TT8aHI2ZlKI/AAAAAAAAADA/nKP541LKFdQ/IMG_0722.JPG?imgmax=800" alt="'Ello" width="500" height="500" border="0" /></p><p>I set my alarm for 7am today.. plenty of time to get Eve ready for school. 7am came and the funky riff of "Sex &amp; Drugs &amp; Rock &amp; Roll" duly woke me with vigour. Picture a movie scene where a hand emerges from the sheets and smashes the 'snooze' button on the clock radio... this wasn't that enigmatic.. just a grunt, leaning over and gently pressing the 'snooze' icon on the iPhone touch screen. Seems true of most technological advances - you miss that nostalgia of the yester-year (remember when you had to turn a dial to tune the radio, and an alarm clock could be set 'roughly to the nearest 20 minutes or so'? Seems you can't win them all.</p><p>Anyway, two snoozes later and I have no spare time to grab 40 winks.. I sit up, wipe my eyes, look to Louise's side of the bed where Eve has been sprawled out like a starfish for the last few nights.. one leg on my side, an arm on my pillow, arm on the floor next to the bed and the other leg reaching over to the bedside unit... Amazing.. and again, genetic. As a child, I always had a double bed... and made the most of the available space. She's downstairs having breakfast with her nan who has been staying in Eve's bed for the last week.</p><p>I've only been sleeping in my own bed for the last 4 nights.. I stayed on the sofa for the first few nights after Joel was admitted, as I was returning home very late and had no idea which bed Joyce was in.. the last thing I wanted to do was climb into my bed and touch the icy cold flesh of the mother in law. Not my cup of tea, though I appreciate some people might have no qualms about it.</p><p>It was only after a few days that she said she was sleeping in Eve's bed that I thought 'great, that means I can get in my own bed... only to discover that Eve was sleeping in my bed. I wondered if I should sleep in Joel's bed, then I thought how much the situation resembled Goldilocks... and thought there's either a bear in Joel's bed, or Joyce might change her mind and sleep in Joel's room... The sofa was therefore a safer choice all round... even if it meant I was woken at 6 each morning.</p><p>7.30.. I shouted for Eve to come up to wash and brush her teeth.. I jumped in the shower after searching high and low for a matching pair of clean socks. Joyce has very kindly been doing the washing while I've been at the hospital, but I don't know what she's doing with it when she gets it out.. I can't find any trace of it. I have a bedside drawer that is full of odd socks.. I've always bought plenty of black socks... they go with pretty much anything, and in my line of work, the last thing you want to see is a pair of white socks sneaking around the back of a stage or around an audience in the dark. The problem is that I've ended up with so many black socks of different styles and brands, that they still end up getting mismatched and lost... so in the relative darkness of an energy saving bulb, I struggle to find a pair of black socks of close enough match to each other.. I have one shade slightly paler than the other. I could always say I've been cruising around with the car top down and one foot hanging out in the sunshine.</p><p>Eve bounds up the stairs, all smiles and the joy of a new fresh morning. I'm trying my hardest to get a bit of life zapped into me by the 'Active Life' shower gel. It doesn't work. I contemplate asking for a refund. I wash my hair with face wash, realise my mistake then wash it with a shampoo for blonde hair. Eve tells me I don't have blonde hair.. I point out that at least it's not grey. Then remember, half of it is, and I'm certain the rest will quickly follow.</p><p>She brushes her teeth and washes her face with minimal fuss. Usually I'm raising my voice to either stop the pair of them chatting and messing about, or telling them to stop arguing. With just Eve here, I realise how grown up she actually is. Joel brings out the child in her.. which admittedly, gets on my nerves at times - like when I'm trying to get them ready for school and they're arguing over who stands closest to the sink or who gets the face cloth out of the cupboard... This morning, I miss the silliness. I've not had to raise my voice at all... I don't miss getting frustrated and raising my voice, but I do miss them both being there and causing me to get in that state.</p><p><br /><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0741.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TT8aMXfAg0I/AAAAAAAAADE/tm5MElKHH8U/IMG_0741.JPG?imgmax=800" alt="Sweeties..." width="500" height="500" border="0" /></p><p> </p><p>The school run is quiet and subdued as it has been for the last week. Louise spoke with Eve last night about the 'C' word... I think it may have shocked Eve because she associates cancer with her grandad Ken, my dad, who died of secondary lung cancer before the kids were born. She asks if the cancer is the same thing as the tumour that was in his brain, and I repeat that it's the same thing - just a different name for it, and that is why Joel needs lots of attention and love at the moment, and why he's in hospital rather than at home... We get to school and parents and friends approach to ask about Joel's progress.. "He's doing great" I say, as if he's on holiday and sent a postcard from a hotel poolside somewhere exotic. I wish he was doing great.. I mean, he is - considering, but "great" now is vastly different to what it was two weeks ago.</p><p>Eve tugs my arm - the bell has rung, and I'm still talking to the headmaster.. I can't imagine he'd mark her as late considering I'm talking to him and that's the reason she's not in the door yet - but I give her a big hug and four or five, maybe six kisses.. still falls short on her regular quota, but times are hard. I pat her on her back and wish her a great day. Mrs. Hart comes over to give me a hug.. I had a shave yesterday, first time in a week, so I point out that my cheek is smooth this time (as she had a hug on Thursday or Friday when my whiskers were lets say, a tad unkempt...). As I say "it's lovely and smooth now.." and give the obligatory 'sales pitch' stroke, I realise that it was getting on for 24 hours since my shave, so clearly wasn't as smooth as I was advertising it to be. "Five out of Ten" she commented.. "Must do better" I replied, smiled, and continued with the headmaster.</p><p> </p><p>Joel's form teacher is not very well either, so was not at school today.. but she has been looking forward to visiting Joel so Mr. Draper, the head, wonders when they'll be able to visit. He asks if Joel is up for visitors and I say yes... but it's probably best to bring a sparring mask in case Joel is in one of his stroppy moods again.</p><p>Eve has been invited to a friends house at the weekend for a sleep over.. She's really looking forward to it and already has an overnight bag packed. I say overnight.. I think she's planning on staying for a few weeks considering how much she's packed. I've checked it with her friends mother, and that's fine - so that's something less to worry about at the weekend.</p><p>I head back to the car ready for the journey into Birmingham.. Traffic isn't as bad as I anticipated so the journey is neither long or (relatively) stressful.. I reach the hospital and turn the corner to see the "Car Park FULL" sign.. dang it.. I have no spare £1 coins for the pay and display car park, so decide to wait a few minutes to see if anyone leaves the main one.. There's a car parked near the entrance.. I'm unsure if he's waiting for the car park or if he's actually parking on the street.. a car leaves the carpark, and this guy just sits there in the car for what feels like a minute or two after the 'FULL' sign changes to "SPACES"... I'm shouting inside my head.. "Come on muppet... move!", then I think he must be parked there as he's looking right at the sign but still sat motionless in the car.. I think I'll park first then go back and see if there's a pulse later. As I pull the car along side to try and catch his attention, just in case he IS waiting - he realises that there's a space, think's I'm trying to cut in front of him, and makes a dash for the barrier... eejit. I pull back into the space he occupied and wait.. it's not long before another car pulls out and I'm allowed through the barrier to try and find that solitary space... As I drive through, I'm surprised to see room for 5 or 6 cars... I don't understand why they're blocking car park spaces? Is this an extension of the NHS's bed blocking?</p><p>Talking of parking spaces - The hospital charges £10 per day for parking.. but you can apply for a special parking rate if you're going to be here for some time.. I believe it's £10 per week instead of per day.. They only have TEN of these permits, on a first come first serve basis. I've filled out the form and handed it in, but not heard anything yet. Why only ten permits? They have at least 3 car parks to my knowledge, including a multi-storey.</p><p> </p><p>I get to the ward, Joel greets me with a huge smile... "Hello matey!!!" I beam, and give him a huge hug. A phlebomotist arrives to take a blood test from Joel, and I go to make a quick cup of tea.. It's not that I'm squeamish - I'm gasping. And it's best I leave plentty of room in there. I return to the room with a lovely hot milky brew, and Louise says Rebecca, the Physio is taking Joel to the gym.. so I leave my tea and we follow Rebecca pushing Joel's wheelchair to the Gym at the other side of the hospital. There, he gets on a HUGE physio bed (looks comfy, all it needs is a drinks holder on the side and somewhere to put a TV remote and I'll buy one).</p><p>Joel is manhandled and his leg muscles warmed up before the real work begins. He can walk - but his balance is all over the place because of where the tumour was, so Rebecca gets what looks like a squashed ball (think giant Galaxy counter!) and puts it on the floor, kneels in front of it, and asks Joel to stand on it. He laughs and giggles - it's fun.. but there's a serious side to it. We all notice that he's standing on the outside of his left foot, twisting his ankle sideways.. it looks painful, Joel is unaware. Rebecca tries to lift his leg to straighten his foot.. without success... We'll call it a work in progress.. there will be many more days of this.</p><p>Then he has to stand on solid ground and balance on one leg for as long as he can. He reaches 8 seconds on his right leg, only 4 on his left. It's a great effort, and he beams with pride and looks to us for our reaction. We're both really smiling and cheering him on. We're proud of him, and he's pleased as punch.. it's still a long way off what he's normally capable of.</p><p>We think of the ballet exam he was due to take in a few weeks time. He loves ballet, and isn't a bit embarrassed about being a boy in a predominantly girl class. We're happy he likes ballet. I'm not a fan of it myself, but I think it's a great way for kids to improve balance, and dare I say it, discipline. I know I wouldn't dare mess about with Miss Avril, Joel's ballet tutor.</p><p>Next, the pilates ball. Is there a more technical term for this? Rebecca asks Joel if he's seen one of these before.. he smiles and squeals "YES!!". However, the one he's seen has a smiley face on it with two horns that he bounces around the patio on... I'm afraid Joel, there's no grip on this one.. Rebecca plonks his bum on the centre of the ball, and holds his waste while asking him to roll forward, backward, left and right.. then to bounce up and down on it. If THIS is what the gym at David Lloyd's is all about, then sign me up.. It looks great fun... Joel does really well on this exercise - all about corrective balance and moving his legs to counter his upper body weight.</p><p>Then I have to join in the next exercise which involves me being in goal. What a laugh. Me.. in goal. I still don't understand the offside rule and Rebecca puts me in charge of goal!</p><p>She stands Joel about five feet away and asks me to roll the ball to him.. that's easy enough. It's a leather football, plastered in Symantec. "At least the ball should be free of any viral infections" I think to myself. It's quite deflated, and the leather panels mean it doesn't roll in a straight line. At least that's my excuse. My first roll goes wide of Joel. I mean - well wide. Very poor first attempt dad. It's so wide, Louise has to get up and retrieve the ball before it goes into a private cubicle where another young boy is being briefed on using his crutches.</p><p>I try again, and this time manage to get it straight to Joel's feet.. he kicks the ball back.. straight to me. We try again, another great roll straight to him.. again, he prods it back with his right foot. "Now roll it to his left foot" Rebecca demands. "Hang on a moment", I'm thinking, "I've only just been able to get it to his right foot"... I try, and once again it goes wide. Second time is lucky though, and I aim it to his left foot.. but he knocks it back with his right foot again.</p><p>I roll it back, and this time he makes the effort to use his left foot - but he's clumsy.. he steps over the ball, and back kicks it. Definitely something going on with that left side. We try again, same thing... Third time, he whacks it back, and scores a goal. (My knee popped, honestly).</p><p>That exercise is over, and we move onto the final exercise.. this looks even more fun than the pilates space hopper thing. The scooters! They're like big roller skates that you sit or lie on.. I'm not sure if they're intended for this kind of exercise, or if they're to exercise amputees.. it reminds me of those modified skateboards for dogs who lose their legs... but crossed with a luge. Either way, they look fun. Joel has to sit on the end of one, and use his legs to pull himself across to the other side of the gym. Rebecca expected him to use both legs in a walking fashion, but Joel opted for the both legs at the same time approach.. he'll make a great rower I think.</p><p>A race is arranged between Joel, and another little boy called Adam. There's a bit of a collision half way along, but they untangle themselves and Adam wins. Joel slipped off the edge of the scooter and landed with a bump.. he accepted defeat graciously, in fits of laughter. We were both loving seeing him having fun.</p><p>Next, the backwards race.. back to where they started.. Joel just managed to pip Adam to the post. I was dying to have a go. Maybe another time, when no-one is looking. I'll bet the physios have a riot on them at the Christmas parties.</p><p>Joel is wheeled back up to the ward. Rebecca handles the wheelchair with a degree of skill and finesse not seen since the Stig left Top Gear. Perhaps SHE was the Stig. She's certainly better at the wheelchair than I was.. I think I dented more lifts, walls and doors than the hospital would like when I tried pushing him last week. I think Joel likes the wheelchair. It's not the prettiest thing in the world, but when you're being ferried around by someone elses leg power, it's got to be good. Mind you - seems to defeat the object of physio when you're given a lift there and back, no?</p><p>We get back to the room and Louise is considering going to pick Eve up.. partly as a way of escaping the confines of the hospital ward she's been in for a whole week, and also because she wants to treat Eve to a nice surprise when she comes out of school. Last night, Joel said the sweetest thing as he was trying to defy sleep.. While tugging his hair as a sign of extreme tiredness, he'd said to Louise "Mommy, can Eve come and see me tomorrow please? I miss her". We both glanced at each other and did that parent thing... "Awww..."</p><p>Louise was going to go home first - her mom had cooked a dinner for Eve and was planning to catch a bus into Walsall, walking up from the town centre to the school, then catch a taxi back home. Uncle David couldn't pick her up tonight, and as Joyce doesn't drive - this was the only option she had. Lots of people have been offering to transport Eve to and from school, but it's one of those favours we daren't take up the offer of. Not that we don't trust anyone.. but it feels like such a burden. We live on the opposite side of the town to most of the other parents, so it seems very unfair to expect anyone to travel 3 miles PAST school in the opposite direction to pick up someone elses child, then drive back to school, and do it again on the evening.. Louise decides she WILL go and pick Eve up tonight and bring her to the hospital, but at the risk of wasting Joyce's dinner that she's cooked.</p><p> </p><p>While she's gone, I'm watching Joel. He wants to play his iPod.. We want to limit him. I agree to let him play it for 5 minutes, knowing that he'll play it for much longer if he can get away with it, I set the timer on the iPod to 5 mins, and hand it back to him.. he plays a game called "Collisions". I don't mind him playing this - it's a challenging puzzle game with no violence and plenty of physics. At the end of the timer, Joel hands the iPod back to me and gleefully says "My time's up!", with a smile. I put the iPod on the side and ask if he'd like me to read book 3 of his Beast Quest series.. he nods, but looks a bit tired.. he has a quick tug of his fringe, then I get him comfortable on his bed... I start to read the preface. It looks like it's about a yeti who causes mudslides to envelope a village on a mountainside.</p><p>As I'm reading, I'm aware that I'm still doing that damned Richard Burton voice. I can't help it. I consciously make the effort to avoid it, but still slip into it. I even suspect people walking past the room are thinking "Why's he talking like that???". I think Stephen Fry makes an excellent story teller - but I still think the Richard Burton voice works on these Beast Quest books. Even if the target readers have no idea who Richard Burton was. On second thoughts, I don't suppose many of them would know who Stephen Fry is, unless you say "He does the voice on Little Big Planet". I continue the story in Richard Burton mode. People still seem to be making multiple journeys needlessly past my window, pointing and sniggering.</p><p><img style="display: block; margin-left: auto; margin-right: auto; border: 0px initial initial;" title="IMG_0739.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TT8aPer0Y-I/AAAAAAAAADI/QWSmtVx3K3Q/IMG_0739.JPG?imgmax=800" alt="So...tired..." width="500" height="500" border="0" /></p><p>Once again, Joel rolls over onto his side, tugs his hair, pulls his bedsheet over him, and goes to sleep. He seems to do this every time I read the books in Richard Burtons voice. Why didn't I know this when he was a baby? Eve would go to sleep within about 10 seconds of you stroking her face with the corner of a wrapped up tissue... Joel would stay awake for hours.. Even recently, he goes to bed at 7-7.30ish and he'd be awake, downstairs, and setting up the games console at 5am.. he learned how to set it up very quickly so he could tip-toe downstairs without waking anyone up to get a couple of hours game play in. Devious, and yet charming.</p><p>I stare in amazement at the boy who drifts off to sleep while I'm reading. I'm reminded that I've done that to myself more than once.. I've been in conversation with people and bored myself while I'm talking, so much that I've completely forgotten what I've been talking about and stood there with a blank expression on my face with people staring at me as if to say "What IS your point?". But for my son to fall asleep on me while I'm reading an adventure story... I MUST be so boring.</p><p>I place the bookmark on the page and close the book.. I'm sure it won't be long before...ah, and there's Colin, as expected. Bringing the sheet around for tomorrows meals. I tell him that Joel has only just drifted off, he says "That's fine, fill it in soon as you can..". I wonder if Joel will get that Kit-Kat from the other day.....</p><p> </p><p>Joel slept for about 30 minutes, then lunch arrived.. Barbecue Chicken Wrap.. again.. Joel ate it wonderfully, spilling only the slightest amount of bbq sauce onto his top.. quickly wiped away. He finished one and didn't want the other.. not surprisingly given their size - they're quite filling.. but he still managed to eat the bag of fruit (apples and grapes), and a bag of Cadbury's Buttons. He even saved the last one for Eve. He really does miss her.</p><p>He has a few sips of squash, and I ask if he wants the toilet. He nods his head, and delicately climbs off the edge of the bed. We wash hands, he waits patiently for me to squirt soap on his hands, and he's learned how to 'scrub up' and do the 'inter-digit' scrub as well. This should come in handy after his next bag of Quavers when he has cheesy fingers...</p><p>He gets back into bed, and goes back to sleep... waking up about 5 minutes before Louise returns with Eve, and Joyce in tow with Marion, asking "What time will mommy be back?". I'm feeling even more useless. Not only did my story telling bore him to sleep, but the first thing he asks for when he wakes is his mommy. That's understandable, she's been at his side solidly for 24 hours a day for over a week, but still jarring.</p><p> </p><p>The meal Joyce cooked is brought into the hospital with Eve, warmed in the microwave, and she sits at the foot of Joel's bed and eats the lot while Joel's burger that arrived a few minutes earlier is cut into quarters and scoffed without waste.</p><p>He's bulking out a little more. With the combination of steroids and lack of any relatively strenuous exercise, he's not having chance to burn of any calories. He can afford to put a bit of weight on at the moment.. when his meds start, he'll need as much in reserve as he can get.</p><p>Louise brings a lego model from home that he'd had for Christmas.. Lego Star Wars.. quite a simple one. Joel struggles again to get the pieces together. I film some footage of his fingers fiddling with the small pieces. I've not mentioned it to any of the doctors yet - Louise thinks it was disappear, but she suggests we'll ask Mr. Solanki when we see him next, just in case.</p><p> </p><p>Again, he starts to get tired and frustrated and on the very last piece of the lego model, he throws the it across the bed and begins to shout. Apparently I'm a stupid muppet. Now it's difficult to tell if he's back to normal or if it's still the medication or effect from the swelling.. He calls me a stupid muppet at home, so at least I feel a little more welcome than I did when he just punched me in the face.</p><p>There's still no news of when he can come home.. He's due to have his Hickman line in on Friday, and was supposed to be seen by the opthamologist Dr. Barry yesterday, but nothing came of that.. we're not sure when that will come - possibly Thursday... I'm sure last week he said it would be Thursday for sake of 'continuity' but then someone told us it would be Monday.. then that didn't happen, so anyone reading this has as much idea as we do.</p><p>Apparently, the Hickman line (a special cannula they insert in the chest which can be used to take bloods and give the chemo so it saves having to keep injecting into the veins and the risks associated with it) is also called a 'Wiggly' - and children usually give their 'wiggly' a name... That takes me back to my pre-pubescant days with my nan telling people to 'give her a tinkle'. Oh yes. My 'wiggly' was called a "tinkle".. of course, we're talking different Wiggly's now, but much confusion and hilarity ensued over the years.</p><p> </p><p>I'm wondering what Joel is going to call his 'Wiggly'.. I think "Wiggly Woo" is a good name. Louise suggested Solanki, after his surgeon, or Indy - for Indiana Jones... <br />Joel chooses Steve. Again, I'm taken back to my childhood when I named my first pet, a Russian Hamster, after my best friend at school.. Alan Woolford. That was the Hamsters name too. Not Alan, not Al, but "Alan Woolford".</p><p>Joel had his cannula removed from his foot and his neck the other day, and it's left a couple of puncture marks that resemble snake bites. So in tribute to the wildlife expert and Deadly 60 presenter Steve Backshall, he's settled for "Steve".</p><p>Joel has done some good work today - some physio (amazing how seemingly little exercise can wear him out so quickly and so much), and he's even done some homework on the computer thanks to the BBC Bitesize website. I hope that isn't part of the recently announced cutbacks faced by the BBC Online department... It's been a godsend while he's been in hospital.</p><p>It comes to home time.. Eve starts crying again - a mixture of missing Joel and her mum. I don't come into the equation.. a little upsetting, but acceptable. I tell Eve that I'll be home soon to rub her back, then remember I've offered to take them home anyway, so off we go.. Joel walks us to the door of the ward again, but he's a bit tired and doesn't really want to participate in goodbye kisses and hugs. I get one (yay!), but no-one else does.</p><p>This doesn't make me feel any better.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0744.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TT8aRjDif1I/AAAAAAAAADM/WHMx-xWZiWg/IMG_0744.JPG?imgmax=800" alt="Get Well Soon" width="500" height="500" border="0" /></p><p>I drop Aunty Marion off at home first, getting out the car to open her door as the back doors have the child-locks on. I then say goodbye and get back into the driving seat.. Marion gets out of the car and walks off... leaving the car door wide open. I have to get back out of the car to shut her door. I shake my head in disbelief. Even Joyce comments. I think even Eve did. There was a bloke replacing a spare tyre by the side of the road in the same cul-de-sac, and I think he may have had a chuckle too.</p><p>Shortly after, we arrive at home. Our next door neighbour Eric stops me to say how shocked he was at hearing the news about Joel. Eric is a lovely chap, and offers to sweep our driveway. He's bored. That's not my impression, he admits it. His garden is so clean and tidy.. his lawn is like a bowling green. There can't be anything more that needs doing to his garden and they're probably depressed at waking up every morning feeling like Margo and Jerry Leadbetter in The Good Life looking over our garden with ducks, rabbits, cat, and toys strewn all over the unkempt lawn.</p><p>I don't mind if he wants to sweep our drive.. if it keeps him occupied, I'm only happy for him to do it. I wonder if he's offering not because he's bored though, just fed up with the leaves making it look untidy.. Sometimes I wonder if he's thinking of selling up and moving, and doesn't want any prospective viewers to be put off?</p><p>I kissed Eve goodbye and drove back to the hospital.</p><p> </p><p>Joel was all smiles again when I arrived back - but Louise said he'd been really stroppy while I was away, shouting and screaming at the top of his voice in a strop. He gives me a cheeky grin... I think he know's he's doing it, but what can we do? I don't know for sure so have to assume it's the op or meds that are still the cause...</p><p>I think they've stopped his steroids tonight, so we'll see in a couple of days how his mood swings go... fingers crossed. He can be stubborn at the best of times.. I dread to think what he'd be like in the worst. He's worked hard today, and has been worked hard.. but his strops are awful.. and being tired usually brings them on....</p><p>Within minutes, he's asleep... the day has been hard on all of us... but it's really taken it's toll on Joel.</p><p> </p>http://asenseoftumour.blogspot.com/2011/01/let-get-physical-physical.htmlnoreply@blogger.com (Jason Sheldon)1tag:blogger.com,1999:blog-3292925915106829601.post-5279879820407589791Sun, 23 Jan 2011 21:04:00 +00002012-10-05T22:15:09.280+01:00Pinch Punch...<p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0729.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTyUXGZCojI/AAAAAAAAACw/bAB_qD8vah4/IMG_0729.JPG?imgmax=800" alt="Siblings at play..." width="500" height="500" border="0" />Joel not concentrating hard enough.. Notice the tongue is only slightly protruded...</p><p style="text-align: center;"> </p><p>I'd set my alarm to get up this morning. My alarm went off just before 8am, followed by a text message from Louise - "Where's the key?".</p><p>Oh rats.... I'd taken the key for the food cupboard in the parents room last night, so now Louise couldn't have any breakfast because her All-Bran, bread, pop-tarts etc were in the cupboard, locked away for safety. It was in the pocket of my jeans by the side of my bed, in Walsall. I texted back... suggesting pizza, sausage rolls, Petits Filous or Ginsters Chicken &amp; Mushroom slice that I'd left in the fridge from the day before. The response was expected, but if celebrities can eat Kangaroo anus and Witchita Grubs in the Australian Outback, I don't think some 1 day old pizza or a Ginsters slice is too bad for breakfast. Apparently, none of that is as good as All-Bran. I'd have thought it would have pretty much the same effect, but there you go. I told her I'd be there shortly. Truth was, her mom and aunty wanted to come with us to the hospital and I couldn't pick Aunty Marion up until 9am.... and I was STILL late picking her up, and STILL forgot to take more yoghurts and milk from our fridge.</p><p>At least I didn't forget the Monsters Inc. DVD.</p><p>...but did forget Cars. Bad daddy, bad, bad daddy.</p><p> </p><p>Today, I joined the elite club.. Louise has been a member for a few days, my uncle John has been a member since last Sunday.... but today, I received my induction. A punch, square in the face, from Joel.</p><p>While trying to make todays Lego model (Lego Creator, model 5868 if you want to know), Joel became quite agitated. His fine motor control was playing havoc again and he was really struggling with putting some of the smaller pieces together. I didn't want to help unless he asked me to, but I could see he was beginning to get angry with himself. It must be infuriating for him, and confusing - he's done countless Lego models.. I imagine he wonders why he struggles now..</p><p>Eventually, I asked if he would like some help, and he muttered 'yes'. I sat close to him, and he still became more agitated. Then he threw the piece he was working on across the room. I sat there and said "That's not very nice is it?" and then WHACK! Right in the kisser. I was stunned.. he seems to be getting angrier and angrier as the dosage of his medication is reduced. I sat there, he sat there.. then he gave me a hug and I told him that I loved him, but that was not acceptable behaviour. He's lashed out a few times today.. I think he's hit Louise at least 3 times, and flung several items across the room.</p><p>It's ironic that his fine motor control is preventing him from putting tiny lego bricks together, but he can still play iPod games and manage to accurately land a decent punch.</p><p>One of Louise's friends visited just before lunch.. She'd phoned a few days ago and managed to get through to the ward.. she didn't know where we were except for the Birmingham Childrens Hospital, but still endeavoured to locate us as we'd been switching our mobiles off when in the hospital. She asked what Joel was into.. Toy Story? Lego? Ben 10? Power Rangers? Check to all of those. Today, she arrived.. with goodies.</p><p>It's really moving when friends go to so much trouble to get in touch in times of need. She didn't have to buy Joel any presents, or go to so much trouble to find us and speak to us to offer words of comfort... but she did. That's what she's like.. always been caring, and probably why she makes a great foster mum.</p><p> </p><p>I think Louise feels a little embarrassed when Joel hits her.. I know I do... while I know I had little authoritative power over Joel before he was diagnosed (my instructions would always fall on deaf ears), it is still embarrassing to be smacked in the face by him. He didn't ever do this before, and I fear that visitors who witness this might think that it's normal behaviour for Joel... That's what I'm embarrassed about. I keep finding myself excusing his behaviour and blaming it on the steroids and pain killers.. which the registrar did say to expect.. I just wonder whether our guests believe us... and I wonder if it will carry on after recovery... How do you control it? We can't punish him for it as it's the medication affecting him, but he's going to realise that he can get away with it and still get a hug and love after he's hit us... how long before he crosses that line of doing it because of the medication, and it becoming part of his normal behaviour? Louise doesn't agree.. I just worry about it. I don't know why I doubt her. She know's her stuff. I just worry too much.</p><p> </p><p><strong>Little Fat Farmer</strong></p><p>Yesterday, we lost the little fat farmer from Joel's Combine Harvester that he'd built... I thought it might be in one of the oxygen supply tubes or perhaps in Joel's nasal cavity, but thankfully, he was seeking refuge behind the radiator. Louise found him in the night... I don't know if he was cowering there for long, but after a good dusting off, he was good as new - and sat in the cab of his harvester.. His coffee cup is missing, but at least that will reduce the risk of agricultural accidents and further burden on the NHS resources.</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0738.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTyUY_RbFgI/AAAAAAAAAC0/TSgZXgOj1RE/IMG_0738.JPG?imgmax=800" alt="Would like to meet - short, blocky, level headed lady with gsoh" width="500" height="500" border="0" /></p><p> </p><p> </p><p>By 4pm, Joyce and Marion were ready to go home. Eve started crying.. she hates leaving us - I think she just hates leaving her mom, but I say that I'll drive them home. Saves them paying £15-£18 for a taxi, and since it's Sunday, I don't have to worry about paying another £10 for parking if I come back.</p><p>Last night, I ordered them a taxi from the same firm who charged £18.. This time, the driver had a tom-tom and got them home in no-time - using the M6 as expected. He charged them £15. So I was right when I thought it would be less than £16 when I queried it the other night. I have no idea why I'm worrying about a trivial thing like that - but I hate being ripped off, and I hate seeing my elderly relatives getting ripped off too.</p><p>Anyway, I almost get home and realise I need to fill up with petrol before I head back to the hospital, so I pop to the petrol station before dropping everyone off.. £66.87 to fill the tank. It cost £45 to fill up when I had that car about 3 or 4 years ago.</p><p>I get home, dropping Eve and Joyce off.. I pop in to the house and pick up some more yoghurts for Joel... Then I joke with Joyce that it will be £14.50 for the lift home. She's still refusing to accept any money off me for the taxi's from previous journey's home.. It's not fair for her to have to pay the taxi fares especially when she's looking after Eve and staying at our house while we go through this. But refuse she does... I'll pay her back somehow. Have no idea how.. she'll only return it as something for the kids anyway, but I would really like her to spoil herself for a change... after everything she does the rest of the time as well!</p><p> </p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0730.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTyUa72jZzI/AAAAAAAAAC4/CYqpl-0Uhkc/IMG_0730.JPG?imgmax=800" alt="I got my new shoes on..." width="500" height="500" border="0" />Joel walks with us to the exit of the hospital</p><p> </p><p>I drive back to the hospital and park in the same street as before. It's quite cold out, but luckily not too far to walk. Joel seems to have become a lot calmer by the time I return... maybe it's visitors as well that is making his behaviour the way it is? He's very loving now, very calm.. then he starts getting really antsy again. He's becoming very argumentative, raising his voice, demanding things, and being silly.. not in a funny way, but very annoying and naughty. We try to ignore it... it's becoming more and more difficult to ignore. I'm pretty sure people on the ward can hear through these walls as Joel is shouting and throwing things around.</p><p>I think he may be having a sugar rush... visitors keep bringing sweets. He wants sweets. He doesn't normally eat many sweets. He's craving sweets instead of meals now... and to some extent, we're giving in quite a lot of the time.. must remember not to spoil him so much.. otherwise it's going to do him no good at all when he comes home.. He is definitely having too much sugar.. Nesquik Milkshakes, sweets, puddings - and that's just the hospital food, before you even get to the treats the visitors are spoiling him with, and we're allowing.. That has to change come tomorrow.</p><p>It's difficult though, not to spoil him, with what he's going through.</p><p>Perhaps Colin has the right idea. He never did bring us that Kit-Kat.</p><p> </p><p> </p><p>It's now 8:45 and Joel is still wide awake and being very naughty. Louise has just gone to give him a kiss goodnight again, and he's whacked her right on the nose. He refuses to apologise or say why he did it. This upsets me greatly.. IS he aware of what he's doing? Does he regret it? I'm sure he doesn't mean to do it... but I hope it doesn't last long.</p>http://asenseoftumour.blogspot.com/2011/01/pinch-punch.htmlnoreply@blogger.com (Jason Sheldon)2tag:blogger.com,1999:blog-3292925915106829601.post-2658960768653408053Sat, 22 Jan 2011 23:36:00 +00002012-10-05T22:15:02.105+01:00Get up, Stand up.<p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0666.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTtu0gIvc0I/AAAAAAAAACY/tX1Z5uIa3SI/IMG_0666.JPG?imgmax=800" alt="Mommy with Joel, Pre-Op." width="500" height="500" border="0" />"A vet.. and a dentist.... and a shark expert"</p><p style="text-align: center;"> </p><p>Joel said that when he grows up, he wants to be a vet. He loves animals. Especially sharks. Then he said he wanted to be a dentist. This gets me worried about the dangers of that mixture.<br />Why can't he like rabbits or budgies like other kids?</p><p> </p><p>Today is likely to be busy... not in terms of Joel's physio or tests, but with the volume of family descending on Joel today rather than spreading out over tomorrow as well.. I've driven in this morning (lovely quick journey along the usually weekday gridlocked M6) - took me less than 20 minutes to get from Walsall to the Hospital, and the main carpark outside the main entrance had free spaces.. Grand.</p><p>I've brought with me, Eve, Marion (Louise's Aunty), and Joyce (Louise's mom). Later on, Louise's Sister will be coming, with her husband.. and possibly Thomas and Keeley (Joel's cousins).. I'm not sure. Anyway, it's going to be busy today, and quiet tomorrow. Not sure how I'm going to get Eve home tomorrow.. or tonight actually... <br />In the week, Eve's Uncle David (Louise's brother!) brought her to the hospital from school with her nan, so I booked them a taxi from the ward to take them home.. "How much is it?" I asked when booking.. "About £16 mate.. where abouts in Walsall are they going?" the operator queried. "Right off Junction 10 of the M6".. "Yes mate, £16 is fine.". So I'm thinking maybe it's only £14-15 then... never mind, as long as they get home safe.</p><p>So the taxi picked them up and took them the bus route home.. A34, through Bescot, Pleck... wtf ?? I live no-where NEAR Bescot or Pleck... then he charged them £18 after I'd been quoted £16.. I won't book that taxi firm again.</p><p>Anyway, today, Joel walked the length of the corridor to greet us at the door. Eve went up to him and it was like something out of Here To Eternity.. they embraced and gave each other such loving hugs.. Eve patting him gently on the back and squeezing him gingerly.. Joel with his arms reached around Eve and his head resting on her shoulder...</p><p>The girls (IE: Everyone but Joel and I) have gone out to the city centre to do a bit of girly shopping. I'm here with Joel, and we've read about 5 chapters of Beast Quest book 2, "Sepron". I couldn't help but read it out aloud to Joel in my best Richard Burton voice "Suddenley, the wave crashed". I was very chuffed... until Joel pointed out the voice for the girl sounded like a man.... These were dark days I thought.. they had no time for femininity when they had Dragons and Sea Serpents to battle.</p><p>Joel said he was tired.. probably tired of my Richard Burton voice.. so I suggested he lie down for a while, and he nodded - looking ever so tired and forlorn. I tucked him into bed, put his headrest at about 10 degrees and stroked his hair for a few seconds and he was fast asleep.</p><p>You can tell when Joel is tired.. he has a really cute habit of tugging at his hair on his brow.. just twisting it around his fingers.. I never liked it - I'm a back rub person... My dad liked his brow massaged, I love my back rubbed.. Joel loves his brow massaged, and Eve likes her back rubbed.. funny old game genetics. Not sure where the brain tumour comes from though, and will probably never know.</p><p> </p><p>About 5 minutes after Joel had gone to sleep, Colin, one of the auxiliary nurses came in with the menu for tomorrow.. typical.. Joel had JUST gone to sleep and he's expected to choose what he wants to eat for dinner and supper tomorrow. I didn't even know what I fancied for lunch TODAY, let alone tomorrow. I asked Colin if I could do it later and he said yeah, no problem. To be honest, I expected more than 5 minutes before asking for it again, but I appreciate they have a lot of patients to cater for. Colin tells me that some parents have been ticking several boxes from each course, and adds 'just be sensible' with a sort of wink to acknowledge that asking for a bit extra will be ok, but don't take the p..s.<br />Joel wants a fruit bag for his pudding tomorrow night... I write on the sheet "If possible, could Joel also have a chocolate sweet eg: Kit Kat" underneath it. I don't think that's asking too much, considering all the other parents ticking several boxes on a daily basis AND GETTING IT.. but still feel guilty.. It makes me as bad as them, so I can't moan now. Well, I can if he doesn't get his Kit Kat.</p><p>5 minutes after that, TODAY's lunch came, and Joel woke.. as if he smelled the food. He remembered what he ordered.. which is good. I couldn't, and I've not just undergone brain surgery. Perhaps I should?</p><p>"What have you got Joel?" I quizzed... half of me testing his memory and the other half trying to remember for myself...</p><p>"Barbecue Chicken" he drawled.. Yesterday his speech was great.. he was reading with intonation and expression again, but at lunch, his speech was back to slow, cumbersome, and stumbling. I'm disappointed, after yesterday's display, but I know that it's either the medication, tiredness, or the swelling still in his brain.. They're cutting down the steroids so the reduction in the swelling isn't moving as fast as it has.. I'm not worried about it in the long term, I've seen it almost completely back to normal since the operation, but of course, you feel like you've just tripped over a hurdle when you see he's not the same boy he was yesterday or at Christmas.</p><p>He tucks into his wrap like he's not eaten for days... I don't know who prepared it, but they can do my sandwiches ANY day of the week - it was PLASTERED in barbecue sauce.. yummy.</p><p>True to form, the first lump of chicken dropped on the bed sheets.. I scrambled for a wipe to clean it off the bed sheet, only to smear the sticky brown sauce all along it. God knows what the nurses will think later, but I'm sure they've dealt with far worse. It could have been marmite, after all.</p><p> </p><p>At the end of the first wrap, I can see he's struggling. "Do you want any more?". He shakes his head.. "Fruit please" and motions to the bag of fruit.. he picks it up and tries to open the packet. It's a tough one, but I help him.. "What do you want first, a grape or an apple?" I ask, as I offer a grape as an apple, and an apple slice as a grape. He giggles - this warms me.. but there's still that slight awkwardness to his smile where his left side isn't lifting as much as the right.. Again, we've seen both sides acting equal, so I'm not <em>too</em> worried about it - and even if that is permanent, it's not obvious.. I don't think it's going to stop him working in Hollywood anyway.. or swimming with sharks. Again, I offer him a grape and say "Apple?". He giggles some more and tells me "That's not an apple, you're silly! It's a grape!" He grasps it and I ask him to bite it rather than put it in his mouth whole... I'm treating him like a baby.. Should I? I think so.. I realise that I did this before he showed symptoms anyway... I've always been terrified of the kids choking on food. I only let Eve have chewing gum in the last couple of months.. she's had 3 pieces in her life. I wonder if that is going to lead to trouble later on? Drink and drugs perhaps? "It's my fathers fault.. He wouldn't let me have chewing gum or boiled sweets as a child..."</p><p>You try to do the best for your children, to protect them.. wrap them in cotton wool - while realising that they need to experience danger. Not that chewing gum or Chupa-Chups pose any greater risk than crossing the road outside school or walking around the bathroom with the toothbrush in your mouth... but this brings me back to Joel.. facing possibly the greatest challenge he'll ever have in life - and I've never let him have a piece of chewing gum.</p><p> </p><p>While I'm thinking about this, the door opens and family start to arrive. Part of me welcomes the company.. but secretly (or not so now it's written here) I just want to be alone with Joel for a while, to savour every moment I can with him - just him and me, giggling, being silly, sharing each other and holding hands. Before long, everyone is here.. the room is crowded - far too crowded. There are only 2 visitors allowed per bed, and there are TEN people in this small room, already overcrowded with balloons, teddy bears, lunch, and luggage. Joel doesn't look too well either - he's getting excitable and there's too much going on in the room for him to relax. I start to lose my patience.. I don't want everyone there - I'm sure the medical staff don't either - but it's family. What do I do? Avoid confrontation. I evacuate to the parents room and simmer.</p><p>I sip a cup of tea while sat in the parents room, then half the family join me. I'm relieved that Joel has some space. The girls came back with a pizza. They'd eaten in the Bullring Pizza Hut, and brought a takeaway for me. Although, Louise said to her mom that it would be fine carried in a carrier bag, so it was less of a pizza and more 'dollop' in a corner of the box when it arrived back at the hospital. I think the proper Italian term is Calzone.</p><p>I tried to flatten out a few slices of pizza onto a plate and work out which bits of ham, pineapple and cheese belong to which slice.. then upon inserting the plate into the communal microwave, I realise the square plate won't rotate in that oven. So I transfer it to a small plate, with edges hanging over the side of the plate. I have no idea how this microwave works, and I've got half the family moaning about something in the background so I just hit some buttons and stare at the pizza as it turns around. It pops and fizzles, and doesn't sound quite right, but it tastes ok. I'm standing up trying to eat my lunch, when Colin enters the parents room to check the fridge and throw out any unlabelled food.. Personally Colin, I wouldn't bother throwing it out.. There's some thieving git on the ward going through all the labelled stuff anyway so it'll go sooner or later, regardless.</p><p>He goes to walk out of the kitchen and nods at the pizza on my plate.. "Smells good" he says.. <br />I have one of those instinctive reactions where you say something but don't actually mean it - knowing that good manners on the other persons part means that you can get away with saying what you don't mean anyway...</p><p>"Have a piece if you like"... "Oooh, do you mind?". Gobsmacked. Joel had better get that bloody Kit Kat now. I warm another piece of the once perfectly shaped pizza and start eating it.. desperate to get back to Joel, but knowing that if I go back, so will the rest of the family...</p><p>Before long, people make their move and it's back to just 2 visitors (not counting myself and Louise, we're allowed, and we won't count Eve as she's a VIP... :))</p><p>Louise also took a trip to Krispy Kreme and bought some donuts.. Lovely! I asked Louise if she knew about the Double Dozen deal.. Apparently she does, and bought the second box of plain ring donuts for the staff. So Colin had my pizza, AND he's got a donut for dessert as well.</p><p>That Kit-Kat had better be one of the chunky ones as well.</p><p> </p><p>The girly shopping took them to The Entertainer to buy something for Joel (more Lego!), then the Disney Store where Eve was bought some Hannah Montana vastly overpriced merchandise, including pink glittery boots and I think it's a makeup box.. why they'd make a makeup box for that age group I have no idea, but in any case, when she opened it at the hospital, the mirror inside was broken.. so that's going back. If the boots are still in one piece and she's able to walk back there of course.</p><p>Nanny Joyce bought Joel a "Lotso" bear from the Disney store. So did Aunty Marion. That's Lotso Huggin...</p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto; border: 0px initial initial;" title="IMG_0728.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTtu5uCJwTI/AAAAAAAAACo/EHB7VPDmePQ/IMG_0728.JPG?imgmax=800" alt="Welcome To Sunnyside Folks." width="500" height="500" border="0" />"and he smells like Strawberries!"</p><p style="text-align: center;"> </p><p> </p><p>Joel is very excited with the lego.. A combine harvester.. Looks complicated. I envisage pieces of lego being discovered for months to come in every nook and cranny in the room... but Joel sits there, patiently.. tongue out, concentrating on the shiny plastic bricks.</p><p>He's showing signs of the tumour... He's very trembly when he's piecing the bricks together. His dexterity and co-ordination is great generally - he can type on the laptop, even on the ipod.. but as per the location of the tumour, it's the 'fine motor control' that is affected, and it's really showing. He's trying to place the bricks together and he's struggling to align them.. I suggest to him that he slows down, takes his time and to try and line the pieces up before trying to squeeze them together.. he nods, but that's clearly not the problem.. it's like watching someone with parkinsons disease trying to build the model.</p><p><img style="display: block; margin-left: auto; margin-right: auto; border: 0px initial initial;" title="IMG_0723.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTtu1jdjRKI/AAAAAAAAACc/HPvDW3Mu3Hc/IMG_0723.JPG?imgmax=800" alt="Engineer at work..." width="500" height="500" border="0" /></p><p>He's doing very well - already halfway through the instruction book - BY HIMSELF except for a bit of tightening of the bricks, when he slips and breaks a small part off the bit he's working on. In frustration, he tears the model apart and flings them on the table, bouncing the bricks all over the room. It's a tantrum, brought on by frustration, a desire for perfection, and I suspect a great deal of stress and tiredness.</p><p>He starts shouting, and while not screaming, it's a raised voice.. full of anger.. at himself, not us. Then he does something he's not done before... He pulls the bed sheet over him, and sits there. Ignored.</p><p>We know there'll be times like this... He's shown signs of OCD before - but we don't think he has it.. but he does like certain order. He's been in supermarkets before and re-stacked displays where tins of beans or whatever have been out of alignment, or put things back in alphabetical order when not asked.. I think I should get him working on my CD collection - but then, I'd rather they not get smashed if he gets frustrated while doing that.</p><p> </p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0724.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TTtu24enOUI/AAAAAAAAACg/kjnsma8A1xE/IMG_0724.JPG?imgmax=800" alt="Go Away! " width="500" height="500" border="0" /> "Leave me alone!!"</p><p> </p><p>After a few minutes, he emerges, calm as you like, and starts to build it again. This time, he asks for help on a couple of tricky bits.. one of them even I fail.. I cannot get the little chubby fat farmer to sit in his seat. I think it's the coffee mug that's blocking the steering wheel.. but he shouldn't be driving heavy machinery while holding a hot beverage anyway.. a few minutes later, that little chubby lego farmer has vanished.. I suspect he may be at the canteen arguing over the price of brown sauce to go on his bacon sandwich... I'm sure he'll turn up.. probably in a few months time in the post, after being discovered blocking the oxygen supply to the ward or something.</p><p>At about 4pm, it's time for Eve to go home with nanny Joyce and Aunty Marion. There's a little disconcerting moment where I think I'm expected to give them a lift home.. I thought it was made quite clear early on that I wouldn't be ferrying family around to the hospital - I want to be there for Joel, not being a taxi for everyone. I insist on paying the taxi fare for them, but they refuse, telling me "family should do things for one another". I agree that family is there to fall back on in times of need, but that doesn't mean they have to be out of pocket for it.... They still refuse the taxi fare. Fortunately tonight, they get a taxi driver with a sat nav, who correctly charges them £16 and goes up the motorway instead of around all the industrial units in Walsall.</p><p>We have remarkably few tears from Eve.. Although there are a few, I remind her that I'll be bringing her back at about 9am tomorrow morning for another girly day shopping (for that, read: "returning faulty goods to Disney store") and possibly getting another donut or two for daddy.</p><p>Joel continues his lego. He's fighting tiredness, but he's adamant he's going to finish it today. And he does. By about 7pm, he's built the Lego Combine Harvester - almost entirely by himself, shaky hands and all.</p><p>I'm pleased as punch - because as he progressed through the model, you could see his finger control getting better and better, and he wasn't shaking half as much toward the end of the model.</p><p style="text-align: center;"><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0725.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTtu4a1qV8I/AAAAAAAAACk/WhMCkBE9Z-g/IMG_0725.JPG?imgmax=800" alt="Ta-Da!!!" width="500" height="500" border="0" />"Ta-Da!!!!"</p><p> </p><p>He completes it, then says "I'll have a lie down now"... then lies down, and goes to sleep, with me lying half on the bed next to him, rubbing his back. He doesn't seem to mind. Frankly, neither do I.</p><p style="text-align: center;"> </p><p>Louise lies on the camp bed next to Joel's. She's in her PJ's, washed, teeth brushed, ready to sleep... one thing missing. Bed sheets. The lights are about to be switched off on the ward, and the nurse opens our door and asks us to turn the lights off. Louise asks her for some bed linen. The nurse quite sharply says "Let me switch the ward lights off first", and disappears, but not before reminding Louise to turn the room light off.</p><p>30 minutes later, I'm still lying next to Joel, Louise is still lying on a bare camp bed when a different nurse enters the room to check on Joel. Again, Louise asks for some bed sheets.. The other nurse had finished her shift, and quickly shifted off. Fresh bed sheets are brought for Louise in next to no time, and almost immediately, Louise is dropping off to sleep. I honestly don't know how she has the strength to stay awake as long as she does.. I was almost falling asleep at several times during the day.. not just because of Beast Quest (The Richard Burton voice does take it's toll, I tell you.).</p><p>Tomorrow we'll have it all again, but with fewer visitors in the room at a time hopefully. I know everyone wants to see Joel and wish him all the best - that's really nice and I don't mind that - but 10 people in a small room is too much for a little boy who needs rest - especially when the limit is meant to be 2 people. I'm going to upset family by saying that, but there you go. I'm not snaping anyone or saying I don't want them to visit, but there are 7 days in the week. Everyone doesn't need to come at the same time.. I'm concerned with Joel's recovery, NOT whether everyone gets equal dibs on seeing him at their convenience.</p><p>He's had more visitors in two hours today than he's had all week since he was admitted to hospital. That's not fair, or healthy.</p>http://asenseoftumour.blogspot.com/2011/01/get-up-stand-up.htmlnoreply@blogger.com (Jason Sheldon)1tag:blogger.com,1999:blog-3292925915106829601.post-8377885166204746539Fri, 21 Jan 2011 22:31:00 +00002012-10-05T22:14:55.258+01:00It's looking like a beautiful day...<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0710.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TTomvrCFBtI/AAAAAAAAAB8/GfKPBTpzJJU/IMG_0710.JPG?imgmax=800" alt="" width="500" height="500" border="0" /></p><p style="text-align: center;"><em>"What a big cookie you have" said the nurse.<br />"Yes" replied Joel, "...and I'm only 6!"</em></p><p style="text-align: center;"> </p><p>Great day. So pleased.</p><p>Dropped Eve off at school.. we had a little chat in the car and I told her how much we love her, how so special she is - and that although she's missing mommy and daddy and Joel, we're all missing her too - especially Joel.</p><p>She seemed fine, but still a little withdrawn. That'll change tomorrow after mommy has promised to take her girly shopping in the Bullring - just the two of them...</p><p> </p><p>On Fridays, I usually visit Starbucks in Walsall with a few of the other parents.. well - it started out as a "Dad's Coffee Morning".. I thought if moms could stand and gossip on the street corner, us blokes could do it with a bit more sophistication and finesse (ahem..).. I say it started out as a dads morning.. it's slowly been infiltrated by moms as well, so now it's just coffee morning and us dads are beginning to be the outsiders....</p><p>I didn't intend to go today, but all week I've been driving to the hospital in rush hour, and it's taken me an hour to get what is only about 9 miles, if that.. only to get to the hospital to find the closest carpark full, and after I've parked at the open air carpark up the street and walked down to the entrance, there are spaces.. so today I thought 'sod it'.. and went for coffee with one of the dads.</p><p>After a 40 minute break in Starbucks (Walsall, for friendly service and great coffee.. ;) ;)) I made the usual journey to Birmingham. I used to work in Birmingham and hated the journey then.. with the circumstances for the journey as they are now, I hate it even more..</p><p>The journey took me half as long, so I didn't get there much later than I normally have been anyway.. amazing how that rush hour traffic can slow you down so much.. but I still couldn't park on the closest car park.</p><p>The ticket machine is STILL not repaired on the open-air carpark, so another day risking the clampers it is...</p><p> </p><p>I took Joel a giant milk chocolate cookie from Starbucks.. I had my usual '2 pump caramel latte' - but today I lived life on the edge.. I went for 3 pumps instead of my usual 2... the normal dosage is 4 pumps for a medium (grande or whatever they call it these days..) but I find that too sweet.. <br />When I got to the ward, I found Joel's bay empty again.. panic came over me.. a few times this week I've been panicked by the lack of bed or even just lack of Louise and Joel in the bay.. but today, the bed was there, freshly made, but no possessions... nothing.. that made me panic more than usual.. Then the lady in the next bay pointed just up the ward a little bit.. I'd walked past the first bay on the right and missed my family.. <br />Well, there was a gaggle of doctors around the bed... (what is the collective term for doctors?? I bet it's something sinister like murder.. but that's for crows...)... Again, I panicked..</p><p>The consultant Mr Solanki was sat on the bed next to Louise. Joel was sat upright in the armchair playing Angry Birds on his iPod.. I came in carrying 3 bags of shopping. So uncouth.</p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0712.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TTo93hSHaKI/AAAAAAAAACE/OH8CGCedZ6I/IMG_0712.JPG?imgmax=800" alt="Good to see you Dad..." width="500" height="500" border="0" /></p><p> </p><p>Mr Solanki was talking about the operation, and the benchmarks for a 'successful' resection of the tumour. If I remember correctly, he said the cut off was 1.5 cubic centimetres (may have been millimetres) of any mass before a repeat of surgery would be considered.. anything below that is classed as total resection.. Joel is left with 0.9 - or 0.4 - either way, Mr Solanki was very pleased with the outcome, and Louise and I are eternally grateful to him. How can you repay someone like this?</p><p> </p><p>It turns out, the bay Joel was in was needed for another patient being transferred from ITU.. As it was right opposite the nurses station, so they needed to keep a close eye on her.. a girl with meningitis. They moved Joel to the corner bay, which was nice and peaceful. Unfortunately, one of the nurses had asked Louise if she'd mind moving, and she'd replied that it would be great as it was very noisy there...</p><p>Parents from both bays next to Joel took that to mean that she was p'd off with them for making too much noise.. well, one of them was to be fair.. He'd apparently been suffering from fits, and the bay next to Joel was kitted out with cameras and computers to monitor the patient 24 hours a day.. the boy was wired up to a computer next to the bed which beeped, whirred, and pinged every time the boy flinched (and he's playing a boxing game on his PSP for about 18 hours a day so he's flinching quite a bit...) and last night they decided to do a sleep deprivation study on him.. so they kept him awake.. and at 4am, his TV was still on, blaring right next to Louise's ear as she slept.. (how much were those 'soundproof' curtains on BBC's Casualty again??)</p><p>Louise heard the familiar 'Ding Ding' (Seconds out!) from his PSP while the TV carried on in her ear.. then the boys mom said "you're not even watching that!" after it had been on for hours keeping Louise awake.</p><p>At 6am, one of the nurses came to his bay and said "You'll have to turn that TV down a little bit, it's a bit loud". Where were you at 4am love?</p><p> </p><p>Anyway.. while making tea, the mom asked me if they had been making too much noise for us to 'request' moving to another bed.. I lied and said no.. but that the nurses station was very loud with talking and phones and door buzzers etc.. The fact was, yes, they were quite loud, but we hadn't requested a bed change at all.. they asked if we'd mind giving that bay up for another patient.. it just so happened it was a blessing in disguise.</p><p>So Louise had packed all the belongings to move to a nice corner bed which was fairly peaceful... I went to unpack the shopping.. I think I may have bought a bit too much.. our storage unit in the kitchen overfloweth.. pop tarts and tomato soup (with a hint of basil no less) falling out everywhere...<br />I got back to Joel's bed and a nurse asked if we'd like one of the private rooms with en suite facilities.. would we?? hell yes! That had just been vacated and it was going spare, so they offered it us.. the other patients must think the sun shines out of our.. well, Joel's at least.. <br />We've been very nice with the staff there, never asked anything of them, never been misreable to them, had a laugh and helped them as much as we can. We value their work rather than expect them to be at our beck and call.. and I guess it also helps that Joel has always been so nice to them while they try to do their tests and observations on him... Plus, as I've just remembered, he's the only one on the ward who has just had a brain tumour removed.. There's me thinking it's karma.</p><p>So we have our own room, if only for a few days.. We'll love it while we have it, but of course, if someone more deserving needs it, we're only too glad to give it up for them. En-suite too.. The only thing missing is Molten-Brown shampoo's and personal hygiene kits in the bathroom.. Joel is excited to have his own toilet.. but during his physio, we'll still try and walk him to the bathroom at the far end of the ward for a bit..</p><p>We've had a couple of 'looks' from the other parents.... they shouldn't be jealous. The room has no TV.. We don't mind - Joel didn't have it on much anyway post-op, and he's too interested in the CBBC website to watch the programs... <br />It's sad that there is some animosity in the air because of the room.. the fact is, I thought the ward was too noisy for someone who has just had brain surgery anyway.. there were visitors kids running up and down the ward all day and parents ignoring the nurses requests to keep them under control.. Joel must be in extreme pain with the pressure in his brain still raised, and getting high with all the stress levels due to noise around him...</p><p>Tonight, in his own room, he fell sound asleep at about 6.30pm and stayed like it for about 90 minutes. He'd have had about 15 minutes sleep in that time out on the ward, with broken bits of nap in that time...</p><p> </p><h3>Who is your favourite team Joel?</h3><p>Earlier in the morning, Mr. English came to visit us and said Joel is not, so far, in the highest 'aggressive' risk group.. I felt myself breath a sigh of relief. He was very pleased with the progress of Joel, and with the outlook for the future. I was ecstatic!! I haven't felt so much relief in the last week as when I heard the words from the oncologist. Joel still needs the chemo and radiotherapy, but at least there's a higher 5 year survival rate for the group he's in. #FTW!</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0714.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TTo94tE1sDI/AAAAAAAAACI/SM2FUzMcEfo/IMG_0714.JPG?imgmax=800" alt="Better and better, every day, and in every way..." width="500" height="500" border="0" /></p><p> </p><p>Then he asked "Has anyone spoken to you about the 'H' word". Oh dear god.. "he's going into a Hospice???"<br /><br />He actually meant home, and hinted that Joel may be ready to start thinking about returning home soon.. it sounds a bit early to us, considering he's still got a big wound on the back of his skull, still needs physio, and has various tests booked for next week - but I'm sure they know what they're talking about and the tests could probably be done in out-patients.</p><p>Then he asked Joel if he liked football.. without looking up, Joel carried on playing Angry Birds (yes, he likes that game!) and said yes. Mr English asked who is his favourite team.. "Liverpool" came the reply.</p><p>I'd planned to buy a couple of tickets for the Wolves V Liverpool match on Saturday - Joel loves Torres, but just before Christmas, he said he didn't want to go to the match.. Never mind... Mr English said that he had a friend who wondered if Joel would like to be a mascot for Birmingham City at their match against Manchester City on Feb 2nd.. "Yes PLEASE!" Joel said.</p><p>Joel is so excited.. the chance to be on TV walking Birmingham City FC out onto the pitch.. I hope he doesn't tell them he supports Liverpool.</p><p> </p><p style="text-align: center;"><br /><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0716.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTo95l0UfUI/AAAAAAAAACM/DW4KH5z9QHY/IMG_0716.JPG?imgmax=800" alt="Sex, Drugs, and Chicken Rolls" width="500" height="500" border="0" /><em>Sats and Drugs and Chicken Rolls</em></p><p><br />Lunchtime comes.. chicken roll and ready salted crisps.. Yummy. He's got a great appetite, and is full of smiles again. I'm a happy bunny. I think Joel knows it too....</p><p> </p><p>After about the 4th milkshake (Strawberry Nesquik for those interested), one of the nurses knocked on the door and said they'd had a delivery for Joel.. two HUGE boxes... friends had bought a teddy bear in a basket, with a bandage just like Joel's.. he loved it - and cuddled it all afternoon.</p><p>The other box must have measured 2.5' cubed... but was light as a feather.. "It's not a strip-o-gram then".. I thought. Louise opened it and out popped a lot of helium filled foil balloons and confetti.. AND a tube of Cadbury's Mini Eggs.. <br /><br />We've just had Christmas - they're already selling easter eggs??</p><p>Everyone came to see Joel's balloons... Among them, a cheeky little monkey with a good message...</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0718.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTo96-Pho7I/AAAAAAAAACQ/qfkjb9Qy0GE/IMG_0718.JPG?imgmax=800" alt="From one cheeky monkey to another..." width="500" height="500" border="0" /></p><p>So today on a scale of 1-10 - I'd rate this as a 10.5. I hope tomorrow is at least as good as today, if not better. We're both feeling more positive about the future.. myself considerably more positive than I had been.</p><p>It's looking like a beautiful day.</p>http://asenseoftumour.blogspot.com/2011/01/it-looking-like-beautiful-day.htmlnoreply@blogger.com (Jason Sheldon)3tag:blogger.com,1999:blog-3292925915106829601.post-4124342240602779347Thu, 20 Jan 2011 15:33:00 +00002012-10-05T22:14:48.924+01:00That's very nearly an armful...<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0699.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TTm8Grq2DFI/AAAAAAAAABc/d4TWrgNsPik/IMG_0699.JPG?imgmax=800" alt="Having bloods taken - not one complaint!" width="500" height="500" border="0" /></p><p>Today has been so busy for Joel.. I arrived late at the hospital thanks to bad traffic on the A34, and the car park STILL won't give a 24hr ticket for £10 despite it being reported on Monday. So, £8 for 8hrs is the maximum I can get the machine to dispense.. (If you put £10 in, the display says "Minimum payment £0.10) and won't issue a ticket... I'm not avoiding paying - it's just broken, so I'm paying the closest amount I can).</p><p>So far, I've not been clamped - but we'll see.. there's time yet.</p><p> </p><p>When I got there this morning, Joel was awake, just lying there. He looked shattered. Hardly surprising - it's not the quietest of wards. Babies screaming, kids with apparent hearing deficiencies on their PSP's until the early hours, and the crackling of the vinyl floor underfoot because the adhesive wasn't laid correctly... (It's like walking on bubble wrap down that ward)....</p><p>Before long, he was playing Angry Birds on his new iPhone....</p><p>We'd bought his older sister Eve an iPod Touch for Christmas. I'd have bought Joel one as well, but he has a tendency to throw his toys on the floor when he's having a tantrum due to getting stuck - be it lego, or a WII game.... the deciding factor in him NOT getting an iPod for Christmas was when he sat on the sofa with a half built lego model and just threw it on the floor smashing it into pieces simply because he'd knocked a piece off..</p><p>He's a perfectionist.. what can I say?</p><h3>"THAT'S why you didn't get an iPod for Christmas"</h3><p>So now after we discover the Medulloblastoma is responsible for many of his actions recently (including the 'messing about' on stairs where he'd bounce like a pinball before crawling up on hands and knees), I think he deserves one - even if it's only because of how brave he's been so far.. but I figure it's also an admission of guilt - for blaming him for messing around when it was all probably beyond his control anyway.</p><p>He was given it yesterday - gave us a huge smile (and not a bad one at all considering he has a bit of weakness on the left side of his face due to surgery so close to his facial nerve.. which MAY be permanent, but that's acceptable in the grand scheme of things). He's taken to it like a duck to water.</p><p>The nurse came round and took some bloods from the central line in his neck. It looks so painful - it's stitched in to prevent him accidentally pulling it out, but it looks so fragile to me - as if you only have to catch it on your top for it to rip out of your skin.. yuk.</p><p>She said she'd take the line out soon.. it sounded painful, not sure I really want to see it.. Joel lies there in discomfort as she draws blood from the tap, but he doesn't moan or complain.</p><p>I go to make a cup of tea and when I get back, Joel's nurse for today says that he's got to go for an eye test immediately.. no panic - just an available slot which they don't want to miss.. "About 20-30 minutes, that's all"</p><p> </p><p>I quickly finish my tea and help Joel into the wheelchair to take him downstairs to his appointment. As I'm bumping into walls and struggling to get the chair out of the lift in one piece, I'm wondering if this might be a more permanent feature in our life for the forthcoming months... I try and joke with Joel "Can I get a photo of you in your wheelchair?" I ask - before cringing and realising I'd meant to say "racing car" rather than wheelchair"...</p><p>When we reach the eye clinic, we wait in a busy waiting room for about 20 seconds before we're called through... A lady gives Joel a series of tests, including the cover test to check his squint, before doing a chart test where Joel's sight is proven to be better than mine, and I'm wearing my glasses!</p><p>At least there's nothing wrong with his eyesight then!</p><p> </p><p>The Opthamologist is a young fellow, very smartly dressed.. he reminds me of Charlie Higson's "Ralph" character from The Fast Show with Paul Whitehouse as Ted. He wears a pale brown suit.. I'm not sure if it's tweed, but it certainly looks smarter than my M&amp;S denim Jeans and shirt which hasn't been ironed in about 18 months.</p><p>He carries out several tests more detailed and varied than the optometrist who saw Joel a few minutes ago... They even take photos of the back Joel's eyes with an SLR camera (Nikon, sadly - no wonder they couldn't get a sharp picture) and we waited back in the waiting room...</p><p>Repeat a few times for different procedures... but on return each time, Joel would try to shut his eyes and have some sleep, only to be disturbed again for a new test, or for what seemed like a forgetful doctor....</p><p>It was wearing ME out, let alone Joel!</p><p> </p><p>He was given a sticker for being 'Brilliant!" and we headed back up to the ward where uncle John had been waiting for 45 minutes, and a parcel had been delivered by Fed Ex.</p><p>What could it be??</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0708.JPG" src="http://lh4.ggpht.com/_UQRb7WOxykI/TTm8ItSoG_I/AAAAAAAAABg/uh3jvLQcNig/IMG_0708.JPG?imgmax=800" alt="A gift awaits!" width="500" height="500" border="0" /></p><p>One of the GP's at Louise's practice had sent a beautiful tin of biscuits from Biscuiteers.. Even the tin itself looked very pretty with its decorations, but what lay inside was even better... hand made biscuits - squidgy cookies with lovely icing....</p><p>Joel was looking forward to tasting them... and after all his hard work, I think he deserved to!</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0706.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTm8Km4LVkI/AAAAAAAAABk/z9F8oZcU3PE/IMG_0706.JPG?imgmax=800" alt="Beautiful handmade biscuits" width="500" height="500" border="0" /></p><p>Look good enough to eat....</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0705.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTm8M-4chtI/AAAAAAAAABo/U4kucqnUQoE/IMG_0705.JPG?imgmax=800" alt="Mmmmm...." width="500" height="500" border="0" /></p><p>So hungry he could eat an elephant!</p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0707.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TTm8O1beTDI/AAAAAAAAABs/uECQGOvzVGk/IMG_0707.JPG?imgmax=800" alt="So hungry he could eat an elephant!" width="500" height="500" border="0" /></p><p>So he did!!</p><p>And it was very nice!</p><p> </p><p> </p><p> </p>http://asenseoftumour.blogspot.com/2011/01/that-very-nearly-armful.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-8181875043754988571Wed, 19 Jan 2011 20:38:00 +00002012-10-05T22:14:40.419+01:00Hello... Is it me you're looking for?<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0692.JPG" src="http://lh3.ggpht.com/_UQRb7WOxykI/TToWt5IF5UI/AAAAAAAAAB0/GbIEqaDoX9g/IMG_0692.JPG?imgmax=800" alt="Happy again.." width="500" height="500" border="0" /></p><p>Eve came to visit tonight. Uncle David had taken Joyce (Mother In Law) to pick Eve up from school, and I'd promised her that if Joel was well enough, she could come and visit. On Tuesday though, he wasn't well so I didn't want Eve to see him in such a state. She wasn't happy. When we phoned home, Eve was in tears, crying "You promised I could visit, you promised me!!". I had to correct her, that I'd actually promised she could visit 'today or tomorrow, IF he's well enough'.. but kids are kids... wants are wants.</p><p>Today he was much better, smiling (though the weakness on the left side of his face is still worrying me - but it's not that bad as you can see from the picture above).. so a visit from Eve is on the cards....</p><p>Eve brought a lot of cards from school for Joel - all the classes had made cards, with good luck messages and love hearts (That's my boy!) - and lovely pictures and poems. Everybody is wishing him a speedy recovery and passing on their thoughts from school.</p><p>The painkillers wear off from time to time (as they do) and Joel starts to get a little angry.. lashing out at mommy when she goes near him.. he's excused, but told that it isn't a nice thing to do.. but we accept a few smacks from him.. I say 'we'.. I've yet to get one, but I'm sure my time will come. You can't begin to imagine the pain he's going through - but yet even the nurses have commented how little medication he's received considering the surgery he's had done... all the other kids on the ward screaming when they have to have any (even orally!) - Joel just bears as much as he can, then tells us he's hurting ever so matter of factly...</p><p>He doesn't like the taste of one of the medicines.. not sure if it's the codeine or paracetamol.. One of them is aniseed flavour, which is, frankly, enough to make me vomit at the smell alone.</p><p> </p><p>We were hoping that Eve could 'Facetime' us when she got home.. the hospital has wifi access, but it's very flaky when the wards are busy, and just moderately flaky when the visitors have gone home.. even so, it's amazing what sites they block, especially considering all the TV's on the ward have the adult channel's listed in the menu (in a CHILDREN'S hospital???). I'm not sure anyone has been watching them on the ward, but I have my suspicions as to one or two that might.</p><p>For the record, I haven't even tried to see if they work. If the car-park charges are anything to go by, I'd be frightened of firstly, the embarrassment of being presented with a bill for 'miscellaneous services' and secondly, the probably horrendous cost. Besides which, the TV's are switched off remotely at 8pm - although they can be enabled on a 'request' basis.. but I can't imagine any parent or child going to the nurses station asking for "30 minutes of Television X" please..</p><p>Besides which - I've discovered the curtains in the TV show "Casualty" must be custom made with soundproofing as Charlie Fairhead talks about patients right next to the cubicle and they can't hear a thing. We've tried drawing the curtains around our bay and you can still hear the boy in the next bed playing with his PSP and farting all night. He's a teenager, so farting as loud as you can is only to be expected.. but surely the battery in his PSP should have died by now?? and he can't watch TV AND play that damned boxing game at the same time??</p><p>Anyway, I received several emails from Eve during the night, complaining that she had been trying to facetime me and I was apparently 'ending' the call before it even connected. The truth is, whenever I did get a facetime request, I'd accept it, but the flaky wifi meant that it wouldn't connect at all.. I can't even connect to the App store to buy Joel "Angry Birds" for his iPod touch... which I'd promised him for being good (Yes, he was going to be bought it anyway - he'd completed the 12 levels of the free version and was getting frustrated at not being able to progress!).</p><p>Louise connected to facebook and managed to update her friends and work colleagues with the day's progress... I connected to the wifi and broke it.. every site 'blocked'.. Facebook, Twitter, even news.bbc.co.uk (what had good old Aunty done to offend the NHS??)</p><p>I'd have to deal with a very upset Eve when I see her next morning.. not to mention the fact that I'd championed FaceTime as a way of talking to each other and being able to see each other while we're apart.. what an epic #fail. :(</p><p>Average day. I say average, I guess it's good overall... but could be much better.</p><p> </p><p> </p>http://asenseoftumour.blogspot.com/2011/01/hello-is-it-me-you-looking-for.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-3292217719917496774Wed, 19 Jan 2011 10:03:00 +00002012-10-05T22:14:10.049+01:00Rollercoaster ride<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0688.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTmpTKrP43I/AAAAAAAAABU/AW9vKEa3ih8/IMG_0688.JPG?imgmax=800" alt="Joel begins his recovery" width="500" height="500" border="0" /></p><p>I dropped Eve off at school this morning. She sat quietly in the car.. not the usual chatty self. I was flabbergasted when two different parents came up to me and told me of their stories. One woman said her daughter came home the night before and said "Mummy, I'm not alone now!". Her daughter has a tumour in her leg. She's 10 or 11? What a horrible thing to go through.</p><p>Another mum stopped me and offered her support.. "I know what he's going through and how you're feeling" she said. She then confided that she was diagnosed with breast cancer before Christmas and was due to start a course of radiotherapy. I had no idea. We hugged, she offered any help she could - moral and logistical support....</p><p>I wish them both a speedy recovery - and to anyone that hasn't been able to come forward and say "I know what you're going through". Sometimes it's just a relief to talk.. no-one has to do anything but nod there head and say "oh dear... well, chin up.." They can fein interest if they like.. it's just good to get stuff off your chest I think.</p><p>At school, the headmaster came up to me asking how little man was doing.. then Mr. Cook came and squeezed my arm and told me everyone was thinking of us. I gave Eve a kiss before she lined up to go into school, and she just took the one.. Normally she'll insist on about 10, no, just one more.. just another one.. one more. Before you know it, half the school are in, the other half are just about to have morning break.. but today, just the one, and she walked in. I think she's getting lonely. Hardly surprising - The car is so quiet going to school now without them both chatting in the back.</p><p>The oncologist was supposed to be seeing us at 10am to discuss Joel's results from the histology. I'm hoping it's benign, but something tells me that if he'd known that last night, he'd have told us - putting us out of any prolonged anxiousness.. so I'm fearing the worst at the moment. I arrived at the hospital at about 9.40 (Traffic in Birmingham is a nightmare, as is parking at the hospital - but that's another blog post), and made my way up to the ward only to find his bay empty.. No bed, no Joel, No Louise... my heart sank. The armchair next to the bed looked like it had been left in a hurry.. was it an emergency?? <br />Turns out there was an available slot for the MRI scan so they took him down for that early slot.. He arrived back and I was overjoyed to see him wide awake, and smiling.</p><p> </p><h3>Cancer is the scariest word of all?</h3><p><br />Five minutes later, The oncologist Mr English (who happens to be Scottish - oh the irony) arrived to discuss the histology results with us, along with a lady named Sue from Macmillan. I doubted we'd be told the tumour was benign, and sure enough, the ride continued... downward.</p><p>They say 'cancer' is the scariest word of all. I think 'Malignant' trumps it. At least with 'cancer', there are so many positive outcomes. The odds are slashed when it's malignant... or at least that's what I have in my head.<br />I'm not sure that any consultant could even instil confidence in me that is not the case... It's a fear I'll have with me as long as Joel survives.</p><p> </p><p>It's a Medulloblastoma, and it's malignant. He continued "There are 3 forms of this particular disease, a low risk, a 'standard' risk, and agressive. He's definitely not in the low risk category". <br /><br />Once again, my heart sinks. It's too early to tell if he's in the standard or aggressive camp, but either way, it's a course of chemotherapy and radiotherapy. They aim to cure, which is good news, but we still don't want to hear it. <br /><br />Louise cried - I held it together for a couple of minutes.. then Louise had to console me. I feel so helpless - almost a burden. I feel like I'm meant to be strong for both of them, but I find myself constantly receiving words of comfort from Louise.... Surely it should be the other way around. The fact that I have very little understanding of what's going on gives me a disadvantage, but if I'm honest, I'd prefer the doctors to talk 'medical' to Louise rather than dumb it down for me. She can always translate it for me later... <br />I suppose that's why it doesn't appear to be hitting me as hard as it is her.. at least not immediately.<br /><br />So now the journey is even harder than I imagined, and longer.. he's facing upto a year of chemo and radiotherapy.. a long year at that, and an uncertain future. a 5 year survival rate of 80% is supposed to give us confidence.<br />It frightens me to death if I'm brutally honest.</p><p><br />So we're definitely not in the 'low risk' camp.. I just pray to god that he's not in the aggressive one. Time will tell.</p>http://asenseoftumour.blogspot.com/2011/01/rollercoaster-ride.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-2459088064423949568Mon, 17 Jan 2011 18:21:00 +00002012-10-05T22:13:59.309+01:00No news is...<p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0684.JPG" src="http://lh6.ggpht.com/_UQRb7WOxykI/TTeNDKhm0KI/AAAAAAAAABM/TX__GyHQx8I/IMG_0684.JPG?imgmax=800" alt="Out Of Theatre" width="500" height="500" border="0" /><br /><br /><br />I'm hoping the saying 'no news is good news' lives up to its reputation.<br />Joel went into surgery at about 9.30am - It's now 6.15pm, Louise and I are waiting nervously for any news. <br /><br />We've had a little walk to the shop at lunchtime... Quite brief.. We weren't really in the mood for walking round a busy city centre full of shoppers.<br /><br />On returning to the hospital Louise showed me the restaurant on the lower ground level... I didn't know this existed, but with sachets of vinegar at 10p each, it's not surprising it's not promoted much.</p><p>That's the other thing - while I don't begrudge paying anything for Joel, it's going to cost me around £210 for hospital parking just to go visit him... - That's if he's in 3 weeks as they imagine. The hospital do a special discount for long stay patients.. but it's a waiting list...</p><p> </p><p>Location: Birmingham Children's Hospital - Ward 10</p>http://asenseoftumour.blogspot.com/2011/01/no-news-is.htmlnoreply@blogger.com (Jason Sheldon)0tag:blogger.com,1999:blog-3292925915106829601.post-8938341128802272755Fri, 14 Jan 2011 21:53:00 +00002012-10-05T22:13:17.590+01:00"Sorry to be blunt"<p>The tone was enough. Those first words from the radiologist confirmed my worst nightmare and pretty much blurred the rest of what he said.<br /><br />"I'm sorry to be blunt, but it's not good news"<br /><br />The 20 minute MRI scan had taken almost an hour before I plucked up the courage to ask the radiologist of the progress. He'd been flitting back and forth during the last 40 minutes or so with a sense of urgency. I had no idea what was going on in there. <br />It turned out that he'd been suspicious of something showing up on the initial scan, so had to arrange a 'contrast' scan which would reveal more detail. <br />He said that something had shown up on the scan, and repeated.. "It's not good news I'm afraid".<br />"I'll know more in about 30 minutes when I've had a close look at the scans". I felt myself welling up, the radiologist left to check the scans.. I collapsed back into the chair and sobbed.<br /><br />While I waited a while longer, and I could hear sniffling and crying that sounded like Louise - but I couldn't tell where it was coming from. Had he already told her? Why couldn't I be there with them when he had? I felt angry, helpless, and bewildered.. and worried about Joel who'd be witnessing all these tears wondering what the hell was going on.<br /><br />Louise emerged from the MRI unit with Joel. She looked at me and started to fill up. She'd already been crying, and could tell that I had. "What did he tell you?" she asked. "Only that it's not good news.. What did he tell you?". He hadn't said anything to her, but as a GP, she knew that when the radiologist appeared, he'd be bringing 'contrast' to inject into Joel, which confirmed that he suspected something was there and needed a more detailed image.<br /><br />He took us into his office, explained to us in great medical detail (I'm not medical, so while it went way above my head, Louise was crying and I knew it had to be bad), and told us that he'd already admitted Joel into the Children's ward to stay the night at New Cross pending bed availability at Birmingham Childrens Hospital.<br /><br />The consultant in the Children's ward was a lovely lady, Dr. Annabel Copeman. She was very comforting, supportive, and reminded us that from this moment, we were nothing but a mom and dad.. I'm not a photographer.. I'm a dad, and Louise is a mom - for the foreseeable future.<br /><br />Dr. Copeman showed us the scans and Louise read the report. The tumour was huge - for a brain the size of a 6 year old boy at least. Approximately 4cm diameter, in Joel's Cerebellum - the part of the brain which controls balance, fear &amp; pleasure, amongst other functions - including attention. <br /><br />I've always joked that Joel has the attention span of a gnat. Louise would always berate me for saying it - but I didn't mean it with any malice. I didn't mind the fact that he gets bored easily.. although it is annoying when he goes off to do find something else to do before I'd finished setting up the train set or joining in his medieval fort game... <br />He gets bored very quickly and wants to move on to the next challenge. Because he's a very bright lad and usually completes things very quickly too, we just assumed he likes a constant challenge - it's a trait both Louise and I possess so why worry about it? He seemed to multi-task very well - leaving one thing, going to complete another, then coming back and finishing where he left off without any problem..<br /><br />The tumour looked massive on his scan. Surrounded by liquid which was putting pressure onto the brain and possibly the spinal cord. I can't begin to imagine the pain Joel was suffering.. he never complains about anything - he tumbles, scratches, grazes and bruises himself - but always picks himself up and carries on - often oblivious to the fact that he's cut himself. Recently, his headaches had him clutching his head in tears. <br /><br />Louise read the report and started crying again. I understood none of it, and even the scans were beyond my comprehension - except for the size of the tumour compared to his brain.<br /><br />Dr. Copeman asked if we had any questions.<br />There were so many questions.. yet the only ones we could think of were the two questions they couldn't answer. How long had it been there and why?<br /><br />She asked if we'd like to go and join her to talk to Joel. I went to get up from my chair and fell back down, head in my hands, I wept. Louise put her arm around me and told me we'd get through this. <br />We pulled ourselves together and eventually went back to the playroom where the SHO had been looking after Joel. He looked at us, his squint glaringly obvious - yet he was still as cheerful as ever - pleased that he'd got so many new toys at his disposal.<br /><br />He was told that he had something in his head which shouldn't be there, so he'd need to stay at the hospital to get better.. possibly for a few weeks. He turned to his mom and said "I think I'll just have a day off school mummy". Louise told him that he'd probably be having more than just a day off.. He pointed to the school room in the Children's Ward and said "No, I'll just have one day off, then I'll go to that one". <br /><br />I had to leave to pick Eve up from school. Joel's 7 year old sister knows Joel is not well, but she doesn't understand the gravity of the situation. It leaves us a difficult choice as well - do we tell her the truth, warts and all, or dumb it down? Or lie and say he's just having tests...<br /><br />We decide to tell her the truth, at least most of it. There are some things she doesn't need to know in detail. In the meantime, Birmingham Childrens Hospital's Neurosurgeons confirmed there was a bed available and they would like to admit Joel immediately. We were transferred to BCH in a Taxi (There was no medical need for an ambulance transfer), and I followed in my car.<br /><br />We were allocated a bed, and within minutes, Roberto (Senior Registrar I believe) introduced himself and explained to us what would happen. Immediately, we felt relief... a huge weight lifted off our shoulders. He explained that they would like to do a more detailed MRI scan over the weekend, and that the consultant Mr Solanki had cleared his entire clinic on Monday in order to carry out the operation to remove the tumour.<br /><br />Everything looking good.</p>http://asenseoftumour.blogspot.com/2011/01/to-be-blunt.htmlnoreply@blogger.com (Jason Sheldon)1tag:blogger.com,1999:blog-3292925915106829601.post-2148983516377053753Thu, 13 Jan 2011 20:07:00 +00002012-10-05T22:12:26.522+01:00Suspicions...<p> </p><p> </p><p><img style="display: block; margin-left: auto; margin-right: auto;" title="IMG_0662.JPG" src="http://lh5.ggpht.com/_UQRb7WOxykI/TTd9F3cC5CI/AAAAAAAAAA4/lbzMDus46Uo/IMG_0662.JPG?imgmax=800" alt="Joel - Happy Chappy" width="500" height="500" border="0" /></p><p style="text-align: left;">Around the first week of January 2011, Joel started complaining of headaches. This wasn’t unusual - we’d all suffered from seasonal flu over Christmas, and we had blocked sinuses and headaches so we thought it’s just the flu dragging on.<br /><br />He was also a little clumsy.. but then, he’s only just turned 6. Aren’t all 6 year old boys clumsy when they’re running around? He’d trip over himself - but he’d been doing that a while for comedic effect and for a little attention.. a little Charlie Chaplin. (He was named Joel Charlie after his grandad Charlie, not Chaplin!).<br /><br />Back in November during an eye test, they found a squint and wanted a closer look. We weren’t worried about this - I have a squint after all, so we weren’t too bothered by Joel having one. <br /><br />Then just over a week ago, Joel was off school after being sick on the Monday morning. I had to take Eve to school, so I asked Joyce, my mother in law if she could come and look after Joel until I returned.<br />When she arrived I was stood in the hallway talking to her about Joel. Then - he looked up from the sofa where he lay, and his squint alarmingly bad.<br /><br />He had a follow up appointment booked at the eye infirmary for February 17th because they wanted to check out his squint and his Hetero Chromia (he has one blue eye and one brown) - although this wasn’t cause for concern - he’d been discharged from Walsall Manor Hospital about this, but New Cross Eye Infirmary didn’t have his records and wanted to get their own facts.<br /><br />I called them to ask for an urgent appointment because I was really worried about the sudden severity of his squint. I was called back 24 hours later with an appointment two days later.<br /><br />Louise took him to the hospital for his appointment with the opthamologist. When he returned, he burst in through the door smiling…<br />“Hey fella, how’d you get on?” I asked. I looked up at his mum, Louise and she burst into tears.<br /><br />They had found signs of intracranial pressure and wanted to get an immediate MRI scan. No slots were available for that day, so one was arranged for the following day.<br /><br />We waited, nervously.</p>http://asenseoftumour.blogspot.com/2011/01/suspicions.htmlnoreply@blogger.com (Jason Sheldon)0